History

Saturday, October 10, 2009 1:48 PM CDT

Eventful Week

Raeanne and Karl made it home safely Tuesday evening, and we have all been enjoying relaxing, eating, playing games, and watching Lord of the Rings movies. We all went to watch Lesa play three sets at her last home tennis meet (it was c-o-l-d!!!!) We wanted very much to hike at Itasca today, but it is SNOWING! Karl goes back to Fargo tomorrow after a week off.

We had TEN for dinner last night to celebrate Paul's birthday! Erik brought three friends--Phoebe (from Malaysia), Ashma (from Dominca) and Brittany (from MN) last night for a big turkey dinner. Everyone played "Pass it Pictionary" and "Egyptian Rat Killer" and we all had a wonderful time eating and visiting! Erik's friends are a delight!

I never remember to sing Paul's praises here. So...this is a good time for it. He has been my rock for so long. I am so thankful for his ability to maintain when I feel like (or am) falling apart. He keeps the family functioning, kids happy and busy with projects and activities, and graciously puts up with my inability to focus. I can't imagine how Lesa and Aron would have fared without him through all this....and how blessed we are that he has a flexible schedule to take care of them. Paul is always calm, cheerful, and takes care of what needs to be done. It is a HUGE blessing to leave the kids knowing they will be just fine...I am so thankful for my dear husband!!! I cannot imagine the added stress of not having him to lean on...I love you Paul!!!!

How is Erik? He looks good, but pale, and seemed tired. I think his hemoglobin is down. It was wonderful to see him last night and watch him eat ALOT! I hope Erik isn't feeling too swamped with missing so many classes next week, and the next. He says his hip bothers him most of the time...but no pain meds.

Paul will take me to Bemidji Monday afternoon and pick up Erik and drop us at the airport. We land in Philly at 1030 pm.

So now the task is to prepare lessons for everyone's school while I am gone, and and plan ahead for the biology class. I am extremely thankful for those who are helping to keep things going!!! I know Lesa and Raeanne have projects they are looking forward to working on together, and they'll keep Aron occupied (and fed) and allow Paul to get some computer work done too.

I am so ready to get this treatment underway. It is also a mental game...I feel so much better knowing the NB is under attack...

Items for prayer--please pray for:

* Comfort and peace for Raeanne as well as for her family in PA as she plans her new life here with Karl
* Peace and smooth sailing for Paul, Lesa, Aron, and Raeanne while I am gone Oct 12 - 21
* No pain for Erik (MIBG can cause jaw pain as the MIBG is taken up by salivary glands)
* Good anti-nausea control (the meds to protect the thyroid also make kids sick)
* CLEAR scans as a result of this treatment (in Dec) and STRONG counts in the aftermath of this radiation
* Good marrow sample from biopsy (his are difficult to get)
* Protection for his laptop--that it DOES NOT become radioactive--he really must use it for school work because of all the software he has on it--but it would be catastrophic for him if it shows radioactivity (the nuc med guys check everything and won't let you keep ANY thing that picks up radioactivity)
* smooth travel and accommodations--and that we can find a room if he is released next Monday (all nearby hotels booked due to convention)
* Erik maintains his amazing attitude through all this...

Thank you dear friends.

Many blessings,
Donna

PS In August CCRF (Children's Cancer Research Fund) sent out this mailer on Erik--I think it is very well done. It even hits me. Worth a quick read:
http://wyatt.tcob.com/ccrf/mailer_aug_2009.pdf

Monday, October 5, 2009 10:53 PM CDT

Thankful. Neurotic.

I am trying hard to keep everything in perspective. Is that possible?

Karl flew today to Pittsburgh to see his true love Raeanne after an entire year of separation....they are driving back to MN and staying tonight with our dear minister from Boston days (Jeff Robinson and family, now near Chicago). Jeff and Tina walked with us and comforted us every step of the way in the early 90s as Erik battled cancer the first time. Jeff took the train to downtown Boston to visit us frequently when few friends felt comfortable with the strict visiting requirements for transplant patients. Jeff willingly washed up, suited up, and even cleverly devised a way to push up our slipping eye glasses using unwrapped straws. You see, if you touched your face, you had to go back into the transplant anteroom and wash up for another three minutes....

Jeff even ran a marathon in Boston with Erik as his "partner" to raise funds for ped cancer research!

So we remain thankful and dearly love Jeff and Tina. What blessings they have been to us!

And we are all rejoicing greatly in having Raeanne come back to us!!!

But alas, I am still neurotic. Today the VMA came back, up again. Up immediately after chemo. This is a kick in the stomach.

But Erik's CBC is good today, thank God. He will surely be ready for MIBG therapy next week.

WBC 3.3, HGB 9.9. and PLT 97, ANC 1500. Thank you God.

Blessings to you all,
Donna

Friday, October 2, 2009 9:04 PM CDT

I kept waiting for HVA and VMA (revealing tumor activity) numbers to post--to find out late today the NP covering for our beloved Jody forgot to check Jody's box....so next week we'll have last week's catecholamines.

Oh well. It is a GOOD thing the MIBG was moved up without waiting for these results-- next week would have been much too late to have changed the schedule anyway.

This week has been a good week. Erik sounds great on the phone. His counts on Monday were good: HGB 10.6, WBC 2.7, PLT 91, ANC 1200. I hope they continue to hold up (for some reason this chemo he is on has a very delayed impact on counts). He saw the radiation onc for follow up appointment on Tuesday, nothing of interest there either.

Erik is feeling well, caught up with his school work, is enjoying social gatherings everyday, and shared an awesome message on Sunday. I cried. He talked all about how much God is glorified in our weaknesses...it is not about us, after all. It is HIS story. I needed to hear this.

But the disappointments continue....Erik will miss a mock interview he had scheduled AND an internship interview while we are in Philadelphia. Ugh. I hate that he must miss these things that are important to him.

Meanwhile we are all so excited that Karl is home tonight, and is flying to Pittsburg PA Monday to meet his fiancee Raeanne and drive with her back to MN! Please pray for safe travels for them and for her difficult goodbyes to all her family...they plan to marry here in the spring! We rejoice in how God has worked through them, strengthening them both this past long year...they will see each other exactly one year after they parted last Oct 5th!!!!

Erik and I are set to leave Oct 12. Erik has several tests on Tues and Wed (Oct 13 and 14) and an MIBG scan, bone marrow biopsies, visit with Dr Maris, and admission all on Thursday (Oct 15). On Friday (Oct 16) he'll have a two-hour infusion of high dose radioactive iodine (I-131) attached to MIBG (meta-iodobenzylguanidine), which will make its way into the NB tumor cells, and hopefully blast them to smithereens.

Erik will be radioactive for a few days, which is why parents are required to give all care (give meds, change bedding, etc) to minimize the radiation exposure to the nursing staff. This all takes place in a special lead-lined room, which is why this treatment is only available in a few locations around the country.

He'll have a post-MIBG scan to see what areas did absorb the radioactive compound, then we'll fly home. He'll have to take meds to protect his thyroid for 6 weeks.

He'll have blood counts checked twice a week, since his counts will likely fall. Most kids who get this treatment need frequent blood products (red cells and platelets) and he'll likely need GCSF shots to boost his white cells.

In early Dec he can return for another treatment if it works...repeating the whole procedure again. Lots of prayer needed...

Please pray for our little friend Sam who has been battling NB such a long time--he is going back to Philly for his second MIBG treatment the week before us (so the last day we should overlap) but he had to have cytoscopy for bleeding from his bladder...and we are praying this is resolved for good.

Today we learned that Nick Franca (also a college student with NB) is inpatient in VA with a possible bowel obstruction. Please pray for him! We are praying it resolves by Sunday, or he will have to go to NYC for surgery on Monday--and he must stay NPO (nothing my mouth) until then! Please pray for him!

Thank you for your constant prayers!

Love,
Donna

Friday, September 25, 2009 9:03 PM CDT

A Week of Anxiety and Lots of Ups and Downs

Erik is doing well--and finished this second two-week cycle of chemo (irino temo) last night. He is fairly well caught up in school and keeping up with his med schedule. We are ALL so proud of him!

With the Monday news of his VMA going up (a tumor marker that indicates cancer activity) after the last cycle of chemo coupled with the fact he had pain in his hip between the last two cycles of chemo (after only 2.5 weeks)....the CHOP team decided yesterday it is best to move up Erik's MIBG therapy by one week. He was initially scheduled for FOUR weeks after this cycle ended, before we knew his tumor marker had risen.

The EXTREMELY disappointing impact is that Erik will miss the programming competition at Digi-Key on Oct 16. Several colleges meet each year to compete. Erik is a senior and a top Computer Science student for his college...and this is a huge blow to their team and for Erik to have to miss such a fun event. The teams stay overnight, have breakfast at Digi-Key, compete, have lunch and company tour, and win prizes. It is so hard for me to see Erik dealt these disappointments. He had to miss his kayaking trip to Idaho after his horrendous scans in August showed terrible progression, and he had to immediately start chemo and 3 weeks of radiation. UGH.

Each of these "bright spots" are so important and take on a huge significance. I want Erik to max out on every thing every day, so these disappointments hit us all very hard.

Also, in light of this evidence the chemo is not working very well, we were so disappointed the possibility of going to Madison for the MIBG radiation therapy is dashed. They won't be treating patients for another couple months, and we can't risk Erik waiting while on chemo that may not be working.

So after a week of many emails and phone calls discussing what should be done (U of MN, UW, and CHOP), yesterday the NP at CHOP called to confirm the new dates, and I bought plane tickets last night. This morning the airfare had nearly doubled.

The lodging is still really unbelievably expensive ($200-$300 per night, and when he is discharged the close hotel is booked so we have to stay in another area of the city--and only one night was available, so hope they don't kick him out of the hospital early!), but CHOP has a fund to help with travel expenses for this trip--future trips we'll have to explore other options. I talked to Hosts for Hospitals today (families who volunteer to host patients and caregivers) and it is a possibility for the return trip in December (20-30 blocks from the hospital).

So my heart is heavy tonight for Erik. I want so much for him to be in that competition knowing how much it means to him. But the fear of pain returning is also a great concern and all of this leaves me filled with anxiety. As it is, he'll get the MIBG 3 weeks after ending this cycle--a long time if pain is an issue.

He'll have the HVA/VMA repeated (results late next week) and counts on Monday.

Please pray for strong blood counts and LOWER VMA. Pray for him to stay free of pain and to feel great.

Erik gives a message to his church this SUNDAY! We'll go and see him.

Raeanne comes back to MN to stay with us Oct 6!

We fly to Philly on Oct 12 and return Oct 21.

PLEASE PRAY FOR ERIK!!!!

Blessings,
Donna

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praiseworthy-think about such things. Phil 4:6-8

Sunday, September 20, 2009 11:15 PM CDT

Erik really should write this entry. He loves to tell this kind of story.

In summer 2000, after his freshman year in high school, he went on his first short term mission trip with our church youth group. They went to Juarez, Mexico to build a house for a family with the ministry Casas por Cristo. Although amply warned about the "different" vegetation in the region, he and some buddies embarked on a little hiking trip, and there Erik encountered a wicked cactus.

When the group returned, the lot fell to Kevin Haroldson (a leader in our church and a talented large animal vet) to try to remove the elusive cactus spine. After a fair amount of digging, it became apparent the barbed spine (or all of it) would not come out.

Fast forward seven years. Erik is battling a vicious relapse of neuroblastoma. In 2007 we noticed a strange bruise on his leg that would not go away. It is roughly an inch in diameter and looks odd. We discussed with his great doctor several times, but it doesn't change, though we all remain puzzled.

Now fast forward two more years--nine days ago Dr Neglia noticed that funny bruise looked very strange--red and black on one side of the bruise. He asked Erik if he had been bitten by something? This is starting to concern me--number one Paul's sister died of melanoma when she was only 16, and number two--NB can metastasize to the skin.

So yesterday we all went to see Erik in Bemidji, and had a nice lunch with my mom and my sister. Erik is annoyed with me (who can blame him?) for asking if I can look at his leg to see if the spot has changed. As he pulls on the skin so he can see it better--out comes this THORN!

Mystery solved. I sent Dr Neglia the photo of the thorn and he immediately replied "that is a good solution"!

Otherwise Erik looked great. He is tired from keeping late nights but school is going well, and since he gets a break on weekends from chemo he felt pretty good. He and his friends had prepared a breakfast feast for his pastor.

Please continue to pray for Erik's counts...I'll post what we learn tomorrow. And please continue to pray about the logistics of the MIBG radiation therapy.

Many blessings,
Donna

Thursday, September 17, 2009 10:34 PM CDT

Just talked to Erik. He feels queasy all the time but is plowing ahead with school. He had a great time with Intervarsity friends last night--in worship and prayer. He worked on his resume today and is preparing for "mock" interviews for internships next summer. I love hearing about his plans.

I will drive to Bemidji Saturday to take him his second pack of Emend (new anti-nausea drug--a fight with insurance to approve) and for Grandma Lou to see him and say good-bye for the summer. My Mom and Dad will go to New Mexico and Texas for the winter.

Please PRAY for Mary's platelets to come up!!! She is on a new antibody and will be dropped from the trial if her counts do not stay up. She has had endless setbacks....she needs a BREAK!!! PLEASE PRAY!!!!

Please also pray for Reggie Thiel--he just had a heart transplant at the U of MN on Sat eve and went into cardiac arrest a short time later. He has served the Lord in men's ministry here a long time in the northwoods and we pray fervently for his recovery and healing.

Please also pray for Doug Cossette who is driving to Fargo everyday for chemo and radiation for a new diagnosis of a difficult cancer.

And please continue to pray for Erik's well-being and school schedule while he continues another week of chemo, and that his counts recover! We'll know on Monday what his counts look like after the first week of chemo--realizing he went into chemo with low counts....(HGB 8.6 and PLT 55). AND we pray the chemo is killing the NB!

Today my friend Neil sent me the link to the UW training video for MIBG therapy--it is very interesting! If you have 45 mins to watch it (um...who does that unless their kid HAS this disease???)....it explains a great deal about what Erik will be getting into with (hopefully) two MIBG radiation therapy treatments. I wish we could go to Madison (MUCH easier logistically) instead of CHOP (Philadelphia) but I suspect UW does not have the compassionate use protocol available there...I have emailed them to ask. Meanwhile plans for Philly continue to unfold for Oct 19 return.

Our homeschool co-op classes have started and somehow I managed to collect 30 kids in my biology class (what was I thinking???). I teach ACT prep next two weeks. Lesa and Aron love all the co-op classes they are taking (Greek, Art, Writing, Science, Drama, etc) and I thoroughly enjoyed working on AP calc with one of my fav senior high girls in youth group last night....and I went running 4 miles and 6 miles the last two days....Paul has been fairly busy with computer jobs and enjoyed a long ride on the motorcycle today to work for a client and to see Lesa play tennis at an away match (she won both doubles and singles).

Erik keeps teasing me I need a hobby. He watches me "thinking" and knows I am always thinking about him, and all the what-ifs...

I am really trying. But it is very hard. Erik is in God's hands. I praise God because He loves Erik best.

Thank you for your constant prayers,
Donna

Monday, September 14, 2009 8:02 PM CDT

Erik still shines!

Erik had fun at the Twins game on Saturday with Mary after the blood transfusion, and went back to Bemidji that night feeling perkier from the blood. He started chemo last night, and is trying to manage eating and anti-nausea meds on his own. He played five hours of volleyball yesterday.

I woke up in the middle of the night with the realization his platelets were 40 and falling...

"...casting all your care (anxiety) upon Him, for He cares for you..." 1 Pet 5:7 ....and after a long while I finally fell back asleep....

He is quite swamped right now with catching up from missing so much school the last couple weeks, and of course has social engagements to catch up on too! Tonight when I talked to him he was visiting with his pastor and family, and then off to a dinner at a friend's house...(but feeling a little queasy...)

I talked to his NP at the U and the onc nurses in Bemidji...we have to set Erik up with a new primary doc in Bemidji in case Erik needs blood products or has neutropenic fevers. And we are still wrangling for more of this new anti-nausea drug (Emend--not approved in peds yet).

One of the nurses in Bemidji was a nurse Erik had in Fargo in 2005 (and another works now at the U) so it was nice to catch up with her over the phone.

We are finalizing plans for return to Philly Oct 19, and praying desperately that Erik will tolerate this chemo well and stay fever-free and counts will recover.

Thank you for your prayers!

Donna

Friday, September 11, 2009 6:50 PM CDT

A New Plan

Erik has decided what he wants to do next.

He starts another cycle of two-week oral irinotecan and one-week oral temozolomide on Monday.

Then, God willing, we'll return to Philadelphia Oct 19 for a work-up before MIBG radiation therapy to begin Oct 23. For non-NB readers, this is a unique type of "liquid" radiation therapy. We have wondered for over four years if Erik's NB "takes up" this molecule by the "norepinephrine transporter." In other words, does his NB selectively "absorb" this molecule? If his NB shows up on an MIBG scan, then it means it will take up this molecule, and higher doses of this radio-labeled (with radioactive iodine called I-131) molecule can be taken up directly by the NB and kill the NB.

An excellent fulltext recent review of this treatment is available here:
http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=2633223&blobtype=pdf

If Erik does not progress (the cancer does not grow), he'll be able to go back to Philly and get another dose during Christmas break (Dec 14) from college. He'll need a stem cell rescue (at the U of MN) a few weeks after that. Then? We'll see...

This type of radiation therapy has been in use a long time--since the 1980s. Erik will be on a "compassionate use" protocol at Children's Hospital in Philadelphia (CHOP) since he does not qualify (age and prior treatment) for newer versions which include adding in chemo, and a version where all the MIBG molecules that are unlabeled with I-131 are removed from the dose--thus concentrating the radiation agent (called "ultratrace".)

For NB parents--why this? You know we have exhaustively explored every other option. Aurora A Kinase is a good agent but too "new" and unproven...and Erik has too much disease--we must be more agressive. Erik will hopefully have his bone marrow tested for ALK mutation next month when we return to CHOP.

The high dose chemo that MSK requires before 3F8 is too high (4200 mg/m2 cytoxan), and Dr Neglia confirms Erik will need to use his only remaining bag of stem cells for rescue--especially since he would very likey require two high-dose cycles to clear enough disease to be prepped for 3F8. These stem cells were collected after "lower" dose cytoxan (and topotecan in 2005), so the likelihood of a quick HAMA is unfortunately high.

We can never say enough wonderful things about our amazing Dr Neglia. He spent a tremendous amount of time with us today--as well as our NP Jody Dahl (who walks on water--if you haven't already heard). We covered every angle, and a complex history makes for a very complex scenario. We KNOW that Dr Maris cannot comment on MSK protocols, and MSK cannot comment on CHOP offerings...so we rely tremendously on Dr Neglia's objective judgement and great wealth of experience. He isn't chosen TOP DOC in Minneapolis every year (and Chief of Pediatric Hematology/Oncology at the U of MN) without reason!

Because of this great gift, and Jody's thorough and detailed care, we are confident that this is the best choice for now. And we rely on YOUR prayers and the mercy of God to get Erik through the next several months.

PRAYERS NEEDED

NUMBER ONE: we pray Erik does NOT progress (ie the cancer does NOT grow) in the next 5 weeks while on oral irinotecan and oral temozolomide and recovering afterward. We are concerned now about his low counts (marrow disease) and hip pain.

NUMBER TWO: we pray Erik stays healthy and strong and does not become neutropenic or need blood products--now or after the first MIBG therapy.

NUMBER THREE: we pray that this radiation therapy (MIBG) knocks the heck out of the NB and reduces his disease burden considerably, so that he is a good candidate for possible follow-on therapies.

Thank you faithful prayer warriors!

God blesses Erik continually! He has been asked to speak/preach at this church in Bemidji in a couple weeks, and he will be hopefully leading his college team to victory in the multi-university programming competition Oct 16--right before he leaves for Philly. And two weeks after MIBG therapy, he and Mary will be speaking at the Dawn of Dream gala event!

The Child Life lady offered Erik Twins tickets at the clinic today--great seats behind home plate with normal price well over $50 a seat!!!! So Mary will join him tomorrow after he gets tanked up with a couple units of red blood.

I cannot explain what a miracle it is for us to see him so strong and IN TREATMENT for 3.5 years and never need blood or be neutropenic....but now that is no longer the case...

So I get the unique pleasure of rousing him at 0630 to get him to the clinic to start blood at 7 am...and then Erik and Mary can have a fun afternoon at the baseball game.

After he wrangled through traffic to hang out with her last week while she got blood (and she became a TV star on WCCO in the meanwhile)...I think it is a nice return of Mary to accompany him to a game after his first transfusion in 3.5 years!!!

And Mary and Erik hung out with Matt last night as he began his second cycle of chemo...please pray for Matt's healing and toleration of this treatment. What a long hard road.

AND what a celebratory feel last night on 5B as Warrior Wyatt was nearing the end of his last week of antibodies!!!! We love the Kamp Family so much and what a miracle it is to see that sweet little guy come so far...

Thank you God!!!

Lastly, back on the ranch: Paul took Lesa to Dad's and Daughters retreat weekend at Camp Lebanon today and Aron is spending the night with his beloved buddy Sam. Karl is in Fargo and his team is getting ready to move into their new digs at the Microsoft main campus! And all of us are EXTREMELY excited to welcome Raeanne back home Oct 5-6!!! Please pray for a loving and smooth transition for her family in PA and for a joyous engagement season for Karl and Raeanne. We praise God for lovely Raeanne!!!!!!

A wedding will be planned for the spring!

Blessings,
Donna

Friday, September 09, 2009 6:45 PM CDT

Greetings from Philadelphia!

We had a wonderful visit with the Hollways Monday night (who created a beautiful "guest suite" out of Molly's brother's room--wow!) and then a VERY early flight out. Erik slept a grand total of TWO hours before we had to get up to leave because he had a project due and of course was MUCH too busy having fun over the long weekend to bother with homework! (Motherly rant slightly suppressed!). Flight out of Chicago was delayed, and we couldn't find any good napping places.

We took a fast and furious taxi ride from the airport to the hotel (he must have been from NYC) and settled in the cushy environs of the Sheraton for a nap, ah... (THANKS Ann & Bob!)

Erik had his heart set on lobster for dinner (I guess because we are so much closer to Maine) and out of 500 restaurants or some huge number in the U Penn area we couldn't find ONE that had lobster. So next best thing? Mad Mex (it was surprisingly good--they had chilies from HATCH NM!!! Reason I am using exclamation points? Paul and I went to college very near Hatch NM and I guess you just have to be there when it is chili roasting season...)

We went to sleep REALLY early and got up REALLY early for the 830 appt. Dr Maris was extremely nice and spent a LONG time with us -- I was shocked he was not rushed at all. I had SO many questions for him I had a hard time prioritizing them because I knew we'd never get through half of them.

Well, we got through all of them.

The good news is he was hopeful, but of course truthful. We already know this is not a good scenario so I appreciate his discretion in how he spoke to Erik.

Erik is contemplating the options we spoke of and we'll fly to MPLS tomorrow. We'll see Dr Neglia on Fri and discuss options and logistics, and we'll post the plan once Erik decides and it is finalized.

Erik and I had a nice Italian dinner with Kayla and her mom Lori. Praise God she is doing well!

PLEASE pray for freedom from pain...Erik's hip is "bothering him" so now the panic resurfaces...is the disease growing???? He'll likely begin chemo Friday with or without recovered counts.

Pray for Erik's peace of mind and confidence his professors will be gracious and understanding this semester as he figures out the plan...it is VERY important to Erik to do well this semester!

Thank you for your prayers,

Donna

Friday, September 4, 2009 9:38 PM CDT

Last night after getting home we buzzed Erik's head...again.

September is Childhood Cancer Awareness Month and "Erik's Effort" this month can be found (and supported) at

http://ccrf.convio.net/goto/ludwinski

General Mills is donating $100 just for setting up the page! And matches $100 earned on each page!

This is Erik's plea:

A Relapse After 13 Years...

Erik relapsed more than four years ago with neuroblastoma--a cancer that usually only occurs in infants and toddlers. It recurred after 13 years of remission. Since his relapse, he has benefited from many different experimental treatments. Without these essential funds for research, Erik would not still be here...

...and Erik still needs your help. He recently learned his cancer is progressing: replacing bone marrow, in hip, spine, lung, and liver, and a lesion in his skull that is pressing on his brain.

There are many children suffering from difficult-to-cure pediatric cancers that require innovative approaches, and this means money. Relatively small amounts of government funds are spent on pediatric cancers...and generous individuals fund a significant amount of the research we need to save kids lives...

Erik and many others need your help! Please consider donating a small amount to bring hope...

And yes, Erik is MIBG positive. Boy, is he positive.

Our beloved NP Jody called first thing this morning and said there are no "spots" on the scan because his bone marrow is lighting up in virtually all his bones. The only bones NOT involved are his lower legs and forearms. I will have the full report next week.

So his bone marrow is really full of NB tumor cells. I am very nervous about pain starting up again, since he has to go three weeks between chemo cycles in order to see Dr Maris next week. We need to decide if he should enroll on the insulin growth factor receptor antibody trial by next Friday when we see Dr Neglia (his spot is reserved). Really hard decisions--he may have too much disease for the IGF antibody to be effective...who knows. He will not have another chance to enroll in that study later, since the trial will fill (for NB MIBG pos stratum).

But since he is MIBG pos this means he is eligible for "compassionate use" MIBG radiation therapy. He only has one stem cell rescue in the "bank" so we would have to use that...and he has too much bone marrow disease to discuss another stem cell harvest.

Please pray for him to stay free of pain, for him to be able to stay in school, for God to guide us in the right treatment choice....and for the little ones suffering now so dreadfully. They are NEVER ever far from my thoughts. I am so thankful Erik is 24. You can't imagine just how thankful I am...

Erik did get to meet Matt, the young man who was diagnosed with neuroblastoma a couple weeks ago and just finished his first round of chemo. Please pray for him as well. I am hoping I can meet his parents next week when we go back to see Dr Neglia.

THANK YOU

I am terribly behind on thank yous. I'll never catch up. I have forgotten who I never thanked. FOUR YEARS and four months have passed since Erik's first relapse....

It is high time I say thank you NOW to all of you who have prayed so faithfully for Erik!

ROBIN, you have prayed, worked your fingers to the bone on Erik's benefit, signed the guestbook with JUST the right words and verses, sent beautiful encouraging emails to me, and just supplied us with Rocky's Pizza gift coupons!!! We love Rocky's Pizza! THANK YOU DEAR ROBIN!

ELAINE, thanks for orchestrating the meals...wow...we are in heaven here. It was awesome to come home from the cities to some really wonderful meals. THANK YOU!!!

BETH, thanks for being a faithful friend. You have listened politely to me ramble ENDLESSLY about this journey. You have been there for me always. You are a really really good friend.

DAWN, you have been my best comforter. Thank you for your tears and your love for Erik and for all of us. Thank you for your steadfast love.

MOM, you have always been the consistent force for strength, confidence, and support. Thank you for believing in me, and for encouraging Erik. We love you!

FAITH BAPTIST, you have all loved us, blessed us with generous gifts, prayed for us every week for more than four years. I can't imagine doing this without your support, prayers, and love.

HOMESCHOOL FAMILIES, thank you for being there for all of us, paying special attention to Lesa and Aron, and for your heartfelt prayers.

And our faithful cyber friends--Roxann and Lisa--wow you two have been faithful friends from the beginning. We appreciate you more than you know...

And lastly our n-blast friends...what a wealth of knowledge, information, kindness, and love. I think it is the felllowship of suffering that draws us so tightly together.

Thank you EVERYONE reading this...

Blessings,
Donna

Thursday, September 3, 2009 10:15 AM CDT

No real news about Erik--but I have two hours to wait while he has his MIBG scan....so I'll give an interim update. Not sure how long we'll have to wait to know if the MIBG is positive. I asked the nuc med tech if he could wink twice if he sees anything out of place (ie skull lesion) and he said he'd need a couple more zeroes at the end of his paycheck to do that. :(

Erik's counts did drop more than we expected from the radiation and chemo. Radiation onc didn't think radiating the skull lesion would have much effect (not hitting much marrow)...and the dose of temozolomide this time was lower (75 mg/m2 as opposed to 100 mg/m2) than he had before with this combination (with irinotecan), so I am concerned. Does this mean lots of marrow replacement with NB? Or tired marrow? I don't know. WBC 2.3, HGB 9.0, PLTs 42. (I know Arden--Mary would still gladly take those counts!)

Erik choked down the SSKI drops (turns blue gatorade an ugly green, tried rootbeer today and that was much better!) and had the MIBG injection yesterday. Since he stayed up half the night before, he took a nap, ate Chinese, and then left to go see Mary (her college is close to Minneapolis). She was on the news last night!

http://wcco.com/video/?cid=96

Look in the list of videos for "Research Brings Hope to Beating Childhood Cancers" (Sept 02, 2009, 5:44 pm CT)

I was hoping he could make it in time to watch the segment with her as it aired last night--since she was in the hospital getting a blood transfusion (and this is her first week back at college)...but the traffic was bad and he got there a half-hour later.

So they got to hang out in the hospital for about 4 hours, and since the Hope Lodge has strict policies about no late entry (after 9:30 pm), Erik had to forgo buffalo wings and hurry back (making it 20 mins after "lock down"...oops).

Meanwhile last night I got to meet the lovely ladies who work so hard to raise money for pediatric cancer research for Childrens Cancer Research Fund! They invited me to a dinner provided for families (inpatient) in the family lounge, and I am so excited about the projects they have underway to raise awareness and much needed funds for research. They also orchestrated the interview with WCCO for Mary.

Please see http://www.completethecure.com/
for the projects ongoing this month for Childhood Cancer Awareness Month! The specific one for the families with childhood cancer experience is the Become a Champion opportunity where General Mills will match $100 for every page created and donate $100 for every page that raises $100 during the month of September!

These funds support cutting-edge research that provides treatments in nationwide trials--like the one Mary started last week and Erik may be eligible for...please check out the link! If you have a child with cancer--consider creating a Champion page, and if you want to support cures for childhood cancer... please donate!!!

We also just learned of a young man (23 years old) who was diagnosed with neuroblastoma two weeks ago, and I am hoping Erik can meet him after the scan is done.

Back on the ranch...Lesa's first home meet (match?) for tennis was a fiasco. She got there an hour early (oops she thought they said 8:15 am, supposed to be 9:15) and the team she was to play didn't come until after 3 pm. They sat there all those hours!!!! She had a great attitude about it all, and won one of the doubles.

And our 3-year old refridgerator doesn't work. Boy do we take things for granted.

Please pray for Pierce Phillips
http://www.caringbridge.org/visit/piercephillips
--this family is facing the worst nightmare, as well as Caden Ledbetter
http://www.caringbridge.org/visit/cadenledbetter
...gut-wrenching tragedy for both of these families. These precious children are suffering a vicious and unimaginably cruel fate...and they need a CURE.

Blessings,
Donna

Monday, August 31, 2009 10:18 PM CDT

Erik is doing well, feeling a bit better, and had fun get-togethers with friends and guys in the CS club (computer science) this weekend. He is negotiating a reschedule for a Malaysian meal he was looking forward to tomorrow-- since (argh) he will be in the cities for his MIBG scan.

No word on counts yet today�Erik got to the hospital lab area right before they closed.

He is going to a club leadership meeting and then organizing a house meeting for all his house-mates tonight. He has class in the morning and will then head here tomorrow to get me.

Erik gets SSKI drops tomorrow to protect his thyroid, injection early on Wed, and scan on Thurs. I am hoping some nice radiologist will read the MIBG right away and give us the answer to a big question we have been wondering about for over FOUR YEARS �if Erik is MIBG-avid. This opens up the possibility of two different treatments if the scan is positive: MIBG therapy, or the same insulin growth factor receptor antibody Mary started last week.

Speaking of Mary�be sure to see her site
www.caringbridge.org/visit/marycatherinevirnig and read about her crazy week!!! How does she do it??? And today she was interviewed and will be on the news on Wed!

If you are anywhere near Minneapolis consider getting your tickets now for the Dawn of a Dream gala event Nov 7�last year 800 guests attended to raise more than $870,000 for pediatric cancer research (Children�s Cancer Research Fund)! If you do go to Dawn of a Dream, you just might get a chance to see Mary and Erik tell a little of their story. I hope after hearing these two speak those present will be moved to write some big checks to fund cures!!!

Karl came home last weekend and we had a GREAT time playing tennis doubles! Lesa and I played against Karl and Paul and Aron ran for balls. Paul and I played two sets tonight and I played GREAT (with just a few close line calls in my favor and extra serves when I double fault!) and Lesa has her first home tennis match tomorrow! I am hoping I get to see her play before Erik and I leave for the cities. Aron has been enjoying lots of time with his friend Sam--Sam's Dad Stan has been wonderful about providing swim dates and tubing adventures etc for them!

Please take time to visit Max and Arden sites. They have families missing them terribly, one year later...

Donna

Friday, August 28, 2009 6:45 PM CDT

Last day of radiation!

Erik also finished his first week of school strong. When I called him just now he was feeling good (after not-so-great last couple of days), out for a bike ride with friends, and planning to meet friends later at a fun gathering spot near campus. Pretty good for two weeks of chemo and three weeks of radiation to the head, huh.

Music to my ears!

He added on another class (14 credits total) and is excited about his classes. I am VERY excited his UNCLE (my sister's husband) is now a professor in the Computer Science department there(!), and I am thinking that can't hurt! :) In fact he was asked to teach Erik's class on ethics and computers...but was hired on so late he decided on a lighter load. Smart man, that Dr Opsal.

Lesa's birthday was yesterday (how did my baby get to be 14?) and we went out for Italian last night, and the day before we had lunch with my Mom at Lesa's favorite place, Bella's. She is enjoying the tennis team, and we're celebrating with pizza and cake tonight (with Karl coming home), and turkey and stuffing tomorrow (her actual BD choice) when the turkey thaws. And she is healing nicely from a rip-roaring case of poison ivy, now that she has 2 days of prednisone in her....

I had a dear neighbor take over my 8th grade Bible survey class (sniff, I miss it already after all the moaning I did) and an administrative genius take over most of the work for my biology class (22 kids!) so now I am working on my schedule for teaching Lesa and another young man Alg II and Geometry (my fav, with Paul as my back up). So school things are now looking...easier.

Not only were we blown away by the generous gift of a hotel room in Philly for Erik's consult with NB expert Dr Maris Sept 9, another beautiful young lady who is a NB survivor, Molly Hollway, and her family will be putting us up for the night at their home in Minneapolis before we leave and taking us to the airport...7 am comes early when the airport is 4 hours away...(what was I thinking???) Thank you Mary and Molly!!! You saved us another $100 easy.

So, with so much uncertainty, Erik thrives. Today is a good day.

Thank you God!

Blessings!
Donna

Wednesday, August 26, 2009 11:08 PM CDT

WOW.

God answers prayer so LOUDLY sometimes.

Last night I posted a whiny post to the n-blast listserv complaining about age discrimination for young adults (over 21) with a pediatric cancer...they are NOT entitled to Ronald McDonald House lodging at CHOP (Philadelphia), and the hospital rate at a nearby hotel jumps from $65 to $200 per night just because of his age. (The principle bothers me a lot). I posted this after I had examined numerous options myself--airport hotels, youth hostels, staying with families, Hope Lodge, and several other options. The bottom line is that even something FREE (like Hope Lodge or a lovely family) would cost close to $100 or more a day for car rental, and the commute via car or public transportation could easily be an hour or more each way.

In response to my whiny post--I received MANY helpful, creative, generous, and amazing offers of ideas and solutions. Even offers to pay for the room at the Sheraton!

Then an old friend from Boston emailed me tonight. He had Sheraton points to pay for our room. He made the reservation for me and then I canceled mine (at $200 per night).

I haven't seen this friend in a very long time. He and his wife (alternating) and I chatted at length during long nights in the fall of 1992 together. His daughter and Erik went through transplant side by side at Boston Children's, but in isolation so they barely knew of each other. I always had this lingering worry about her parents' sanity because this adorable little girl insisted on having Barney videos playing all her waking hours....:)

She is beautiful and healthy today. Praise God!

THANK YOU!!!!!!!!!!!!!!!

Love Donna

Tuesday, August 25, 2009 5:13 PM CDT

New site!

www.caringbridge.org/visit/erikludwinski

(The only difference in the web address is the �visit� instead of �mn� tucked in the middle--and automatic notifications of updates available with the new site!)

Yes, I succumbed to the �new� caringbridge site format finally�since I know how dependent I am on getting those emails saying �CaringBridge Journal Update Notification for �� AND I have family and close friends who keep asking me what is going on with Erik�because they lost the website (or it locks up on them due to the �enhancements� Erik added!)

I�ll continue to update both sites with the same updates�but if you want the update notification please click
on:

�I want to receive Journal update notification e-mails� and click �SAVE� at the top of the journal entry.

The old entries in the journal history will be stored at the OLD site www.caringbridge.org/mn/erikludwinski

Erik is pretty overwhelmed, busy, tired, and not feeling so great. He added another class back in--now taking 14 credits.

Please keep praying for him.

Only THREE more radiation treatments to go. Counts yesterday were a bit better:

WBC 3.9, PLT 83 and HBG 11.8

Stay tuned, more to come.

Thanks for praying!!!
~Donna

Sunday, August 23, 2009 9:38 PM CDT

Erik went back to Bemidji on Friday for radiation, took his last dose of chemo (irino) and stayed to get settled in for school starting tomorrow...even though he is handling everything perfectly it is hard for all of us, especially me, to let him go. But we are so excited for him and pray his new classes go well and all of his instructors are understanding about the serious battle he is fighting, and the necessary time away for tests and whatever else comes up...

He continues with the third week of radiation everyday next week and please pray his counts stay strong so there will be no delay to the radiation or next treatment.

I have been praying so hard for so long for so many precious children...I have been feeling discouraged when there is SO much bad news and so much difficulty...and naturally fearing for Erik all the while.

Please pray for Mary's results and good treatment options tomorrow when she sees her doctor. She has been battling NB for 3 years and has been in college for 2 years all the while getting chemo and (and even got MIBG radiation therapy in San Francisco over her Christmas break her freshman year!) THAT is tenacity. Like Erik, she is anxious to get back to college too, so please pray for her.
http://www.caringbridge.org/visit/marycatherinevirnig

Also please pray for Sam, who has been battling NB for 4.5 years (with a small break after stem cell transplant) and now is in pain and under going MIBG therapy at CHOP. Pray for dramatic response and pain to cease!
http://teamsam.com/

Little Caden is suffering terribly and both MSK in NY and VT have told his mom Lexie there is nothing they can do for him...he is in so much pain he can't walk...her writing profoundly expresses her faith and pain and grief...please pray for this dear family.
http://www.caringbridge.org/visit/cadenledbetter

And tomorrow Tyler should have a birthday party...and his mom misses him. Pray for these grieving parents....
http://www.caringbridge.org/visit/tylerstolp

Blessings to you, and thank you for your prayers,
Donna

Thursday, August 20, 2009 11:09 PM CDT

What a great blessing!!!

We are thrilled Mary was able to join us for dinner (after lots of driving all around the state today!) and then meeting up with the rest of her family here (minus Zac, home doing chores) en route to Grand Forks in order to deliver her sister Sarah to college.

We are so impressed by this amazing, incredible family. Please pray fervently for her results next Monday (Aug 24) because we are all begging God so very desperately for good news for her...

Meanwhile Erik is still doing GREAT. Minimal nausea and no pain. Yesterday we saw the radiation oncologist and discussed his low platelets--we are not sure why--PLTs on Monday were 66 down from 140 the week before.

He never had that much of a dive before on temozolomide, the likely culprit...

I guess crummy normal stuff still happens even with all this--we noticed his tire was ALMOST flat after radiation, and it was only two blocks to Wal-Mart, so I decided to drive there to ask about repairing the tire...ruining the tire, and so poor Erik had to fork out big bucks for 4 new tires...and we had to wait 3 hours.... UGH. In the process Erik saw some friends, picked up school supplies, and a microwave. He also did a phone interview with the ACS lady in Iowa to give her quotes for the promotional material they are doing for Hope Lodge--he had a photo shoot right after the bad news last visit in the cities...

He drove to radiation by himself today so he could get his books and I could cook for Mary....

Looks like he will be able to go back to Bemidji tomorrow, and take himself everyday to radiation the first week of school.

Please pray for him!!!!! Please pray for Mary!!!!

Many blessings,
Donna

Tuesday, August 18, 2009 9:25 PM CDT

Erik is doing well!

He is amazing, actually. No pain, doing great with nausea. He played ping pong yesterday and went for a walk. He spent the whole day figuring out the best scenario for his class schedule, prepared documentation required for vocational rehab, and sent in his summer grades, class schedule, tuition and fees, and book list...all finished by exactly 4 pm upon returning from radiation treatment.

He should be able to pick up his books tomorrow!

He is planning now to return to Bemidji to finish out this cycle of chemo (ends Friday night) and radiation (ends the following Friday after a full first week of classes). I don't sound a bit concerned, do I?

I know he will do well--I just hate to NOT be at his beck and call.

So Erik's schedule looks like this:

First week of college = radiation every day (Aug 24-28).

Second week of college = miss three days for MIBG scan at the U of MN (Sept 2-4).

Third week of college = miss four days for trip to Philadelphia and then consult at the U of MN (Sept 8-11).

Then figure out what treatment to pursue....

Pray for Erik's understanding and compassionate professors. I keep thinking--he is a senior with a 3.9ish GPA--give him a break! He'll come through.

Much of my time today was spent with a flurry of emails with U of MN and Philly. Tickets are purchased (again) for Sept 8-10 for Philly to see Dr Maris. (This time $460 round trip!--better than one way tickets to NY!) We'll know what options we have to discuss based on whether or not Erik has positive MIBG scan results the week before.

Lesa went to tennis team practice and I took Aron swimming after returning from radiation. The lake and sky and sun were so calming. We grilled hamburgers tonight, and Erik is in great spirits.

Meanwhile we had exciting news of good results from the first child on the NK cell study at MSK in New York. That also gives us hope!

Please keep praying. Erik has a long way to go, and so much uncertainty... But Erik continues to rise above his circumstances!!! Praise God for giving Erik strength and hope.

Many blessings,
Donna

Sunday, August 16, 2009 9:06 PM CDT

Another good day!

Happy Birthday MOM (AKA Grandma Lou)!!!

I was supposed to be on the west coast now with my dear Mom to visit an elderly relative (my grandpa's cousin)...but I am sure you can guess what came up.

Karl was home this weekend--Paul and all went to church this morning while I stayed home with Erik. Yes, we're being antisocial. But remember Erik doesn't feel very well. Radiation to the head on top of chemo is a new phenomena--we're getting it down.

Sadly we missed an attractive offer of dinner out with the family of an exceptional young man (I had the privilege of reviewing AP calc with him the past school year), and another family wanted to drop by (still feeling sick and antisocial)...and another friend dropped off dinner while I was out for a walk/run...what a nice surprise!

Erik and I discussed treatment options today (complete with flow diagram showing smiley faces for treatments that are "easy"....and tears on sad faces for those treatments that no one should be subjected to, ever...) and also looked at his class load--trying to figure out what he should drop. Classes start next Monday...

We are now thinking of planning a consult with CHOP (Children's Hospital of Philadelphia) around Sept 2...the second week of school. Please continue to pray God paves a clear path...so very much still to consider...I have received many helpful emails from doctors and friends with ideas.

GOOD NEWS is that this chemo is working--the pain in his spine has completely subsided.

FUNNY QUOTE of the day::

In response to Paul's encouragement for Erik to play ping-pong...

Erik said: "Let me download my lunch first."

BLESSINGS
Donna

Saturday, August 15, 2009 10:52 AM CDT

Yesterday was a good day. Minimal nausea, minimal pain (no pain meds for two days), ate well and drank plenty. I made him ramen with curry in it--he really liked it. We had an uneventful trip to Bemidji for his third radiation treatment. Lesa, Aron, and Erik have been playing new PS3 games Erik bought. Paul is still fixing computers and finished painting the house. Karl came home last night from Fargo and we all watched an anime movie about a little boy with a steam machine and I fell promptly asleep even with all the yelling in Japanese!

You KNOW Erik is feeling better when he is back to his crazy sleep schedule. I got up at 430 am to give him his antinausea med and he was still up--posting on facebook and playing computer games!

Needless to say he is asleep now, it is a gloomy Saturday but at least a little cooler. No radiation today, and no chemo tonight.

I am trying NOT to stress about the "plan." The problem is we don't have a plan. Too many variables. I need a flow chart with IF THIS ...THEN THAT...

I talked to his NP yesterday and she is being so patient with me but I am sure she wants to slap me by now. I asked her about getting an MIBG scan 3 weeks after chemo ends and 2 weeks after radiation ends--putting us at Sept 14 (scary to let him go so long--risk of progression) to see if he is MIBG positive. If so, he would qualify for IGFR antibody (Cixutumumab) at the U of MN. Of course we have NO idea if it would work�I know one young lady (refractory) who started in July and seems to be doing well so far. But I hate to put him through high dose chemo (with the aim of prepping for 3F8) without knowing if this other "easier" treatment might work. It is tough to know if his disease is taking an aggressive turn (always a great fear). So if he qualifies, we take the chance of progression waiting to scan 3 weeks after chemo, then risk more progression if the Cixutumumab doesn�t work, and he could be in pain again. But that might be the time to do high-dose chemo with the hope that 3F8 will work and he won�t HAMA prematurely. But then he�ll have more disease to get rid of and might require two high dose cycles. UGH. There are no easy answers and there is no clear path.

All things to keep you awake at night.

The aurora a kinase inhibitor MLN8237 is only available to under 21, and I am waiting to know if prior SCT eliminates Erik from the ALK inhibitor PF-02341066 (there is an adult trial, but I think eligibility is too rigid). Jody is checking into whether they can test bone marrow for ALK mutation�he might get an exception for access to this drug if so�.

Meanwhile I am hoping to set up consults in New York and possibly Philadelphia after radiation is finished (Aug 31).

Please please pray for Erik, and that God makes a clear path. In all of this Erik is stressing about what to do about school that starts in one week, and moving out of his house�

So thankful for your prayers,
Donna

Thursday, August 13, 2009 10:32 PM CDT

Okay--dare I say it--he IS better today! NO pain meds, and I think we tweaked the anti-nausea meds successfully. After not drinking enough the past several days--today he ate well (toast, jasmine tea, pretzels, grilled turkey/ham and cheese, ramen noodles with meat) and 70+ ounces to drink! He likes the Bolthouse juices, and hasn't felt nauseated or excessively tired (although he slept 13 hours last night).

Second radiation treatment was fast. Getting there and back wasn't. Two hours riding in the car for 15 minutes in the clinic...but he felt okay. Two down, 12 more radiation treatments to go. His last day is Aug 31.

It was hot and humid today, and I coaxed him out for a walk before sunset--it was beautiful (SHOULD have had the camera--very picturesque!)

Erik, Lesa and I walked 1.5 miles (with our 2 dogs) and Aron rode his bike. Paul was mowing.

Time for more chemo. Thank you for praying!!!! Please please God-- can the chemo be reducing the cancer in his spine already???

Blessings,
Donna

Wednesday, August 12, 2009 7:01 PM CDT

**** UPDATE THURSDAY MORNING****

I need to stop saying "he's not in pain"...because shortly thereafter he asks for pain meds. Yesterday I wrote he wasn't nauseated, and his lost his little bit of dinner and all his meds last night. He slept over 12 hours again...

Keep praying for control of nausea and pain, thanks.

****************

Erik slept 17 hours last night. That was scary. I am hoping he is just catching up. The combination of anti-nausea drugs and pain meds may be some of the reason (zofran, ativan, benadryl, and oxycodone).

The radiation oncology clinic called and said they pushed up the planning so that Erik could start radiation today. He was a bit nervous--remembering how deathly sick he was after the first dose of TMI (probably because the mask was too tight). He is tired and nauseated, and taking pain pills twice a day.

They are doing 250 cGy for 14 days. That's 3500 cGy which seems like a lot. I called the radiation onc at the U to make sure this is what she would do, and she said yes, the amount that hits the brain is small, and this amount is fine on top of the TMI he had.

So in between monitoring his sleeping, eating, drinking, and pain, giving meds, and driving to Bemidji every day for radiation these 3 weeks, we will continue to search out all possibilities for Erik for further treatment. It is complicated in that eligibility is tough for some trials.

Our dear NP puts up with so much from me--I asked her yesterday if it was possible to do a biopsy on the skull before radiation starts so we can know if he has the ALK mutation (I didn't know they moved radiation up to today)--she was nice and said that would be tough to do.

So she is checking into whether or not they can test for ALK mutation with original tumor--we'll see. I am also hoping we can get in an MIBG scan before disease is gone--if positive, it will mean he could be eligible for certain trials that require measurable disease but positive bone marrow doesn't count--for example a new humanized antibody that targets insulin growth factor receptor is open at U of MN and Erik would be eligible with a positive MIBG scan. I also emailed MIBG therapy expert to find out if TMI eliminates him from possible MIBG therapy (if MIBG-avid).

And there's more (much more) but you get the idea. Paul is trying to get work done, Lesa had fun at Valley Fair, Aron went swimming with a friend, and Erik is playing a new video game. Aron and I picked the last of the raspberries yesterday and then he beat me in a game of chess (I was honestly trying!)

I alternate crying with being truly uplifted by the many guestbook entries, emails, visits, offers of help, and calls from dear friends--one I was thinking about calling while waiting for the MRI to finish...and that friend called at that very moment! A couple of other friends who lost their beautiful children to NB encouraged me tremendously with rich words of hope...exactly what I needed to hear....

God is at work. He knows what He is doing. He is always wise.

Please remember beautiful Mary in your prayers! Her tests are this week and she needs mega miracles.

I think I'll go for a walk....and do a lot of praying.

Blessings
Donna

Monday, August 10, 2009 3:51 AM CDT

*****TUES AFTERNOON UPDATE*****

Chemo started last night, slept okay, feels a little icky. Playing with anti-nausea meds til we figure it out. Pain seems to be better, no pain meds since last night but he is in pain (a "5" on a scale of 1-10). He is tired but in good spirits.

Thank God we found out results of MRI--no lesions in CNS (brain)--no final report on spine but radiation onc said no spinal compression. Thank you God, again..

Radiation planning was a little crazy. This poor man is covering for another radiation onc in Bemidji, and walks right into Erik's long complicated history--after looking over all his stuff including scans from last week and MRI from yesterday--he said "I think we should radiate his whole brain" and I almost threw up. I could write 10 pages on it but suffice to say he was extremely honest and patient and after examining every possible option (including surgery) and making him call Dr Neglia AND then Dr Dusenberry (radiation onc at U of MN who did Erik's total marrow irradiation) to make sure we are doing this right...he confirmed that 3D conformal radiation to JUST that spot is what Dr Dusenberry at U of MN said she would do, and she told him do NOT radiate spine or hip, we'll see what the chemo does for those spots. Whew. Radiation starts Thursday. We'll stay home one day--and drive to Bemidji every day for radiation for the next two plus weeks.

(You can see CT of head last week in "view photos")

Please pray the chemo knocks out the pain and melts away the rest of the cancer!!!!

Blessings, Donna

***DONNA'S MON NIGHT UPDATE****
What a nightmare. Erik's pain has continued, and now includes lumbar spine with intermittent neurological effects...

Dr Kushner called this morning and said NOT to come to MSK--he has too many patients. Great--I already booked tickets, and had the insurance and other details resolved in record time (less than 3 hours!).... Erik's doctor wanted MRI (so after many false starts) Erik had MRI in Bemidji via emergency room (yep same place as yesterday).

So back to plan A--Erik starts oral irinotecan and oral temozolomide tonight, and we'll go back to Bemidji for radiation planning tomorrow--and get results of MRI done today. Please please pray there is NO involvement in CNS...and pain in spine quickly subsides from chemo doing its thing...please pray this does not eliminate him from any other possible treatment later...

Erik is of course amazing. I asked him what he thinks about in the MRI machine for over an hour...since he can't fall asleep...he said he listened to the loud noises and tried to make music in his head with them--certain beats and instruments...can you believe him? His creativity is astounding.

He is playing a new game with little brother Aron and pain seems to be controlled well--Karl went back to Fargo after appts in Bemidji for teeth and eyes, and Lesa is going to Valley Fair tomorrow--where Erik and Mary had planned to spend the day today....

Just breaks my heart. We were so thrilled to see Mary in her glory with her beautiful cattle at the county fair (along with her awe-inspiring family) on the way home from U of MN last Friday. Please pray for Mary's tests this week. May God visit her with miracles! She is such a brave and beautiful young lady.

Please pray!!!!

***************************

This isn�t my usual pattern. It usually takes me a couple weeks to find something to write about. I also don�t write to rant. There are plenty of people like that on the internet as it is. I�m not emo. I write whenever I feel I have some sort of epiphany that I think might help someone else. Writing helps me learn things. I want to find the good in every event in my life and share. I can share those thoughts easily because they encourage and lift up. Most of all, I want to stay strong and positive because in reality, I want to protect everyone else.

There are many people who might want me to share my deeper feelings so they could help ease my burden, but would only make it awkward. After all, what could they say? What could they do? Then there are some that just can�t handle it. Sometimes the mind can�t bear the pain of watching a loved one suffer. Is it really their fault? I�ve long since accepted the fact that I can�t talk to my siblings about what I�m going through because of the pain I would be inflicting on them.

For the longest time it didn�t matter. I didn�t need any help, because everything was going so smoothly. One of the most difficult aspects of the cancer world, however, is that reality can change overnight.

We only posted two updates during the entire month of July. Nothing was happening, and I got used to it. It felt like the rocky road was behind me and I was cruising along the highway. I even started to daydream�I could see myself graduating college, starting work for Federated Insurance, buying a house, finding a wife, starting a family, living a normal life. Heck, I felt normal already. Then I hit a speed bump.

Not even a large speed bump, considering what I�d been through already. It shocked me regardless, not because I totaled my car, the ride wasn�t over� but because that dream fizzled. I dared to dream and reality smacked me awake again. Oh yea� I almost forgot. My life isn�t normal. I have cancer.

I was supposed to go Valleyfair tomorrow. Next, kayaking in Idaho. Then fall semester would start. Then the rest of my future would follow. Instead, I�ve got constant pain in my back, a one-way ticket to New York, and high doses of chemotherapy and radiation to look forward to when I get there. Insert whatever advice comes to mind about God and plans and counting chickens before eggs, it�s been beaten to death. Does it ever stop people from making plans, though? Does it ever stop people from dreaming?

How do I explain this to someone who hasn�t been there? How do I even form my own feelings about the situation? One minute racing towards a finish line, and the next minute having reality shattered around me like I was yanked out of the matrix. This isn�t a world of fairytales and Hollywood endings�unless you�re in the mood for a horror movie. I guarantee it�s not for the faint of heart.

Only the strong survive, and that�s why people like Anna O'Connor, Mary Virnig, and Breanne McGuire are so valuable. They�ve been there. They know what it�s like, and they can handle it. They remind me I�m not alone. I also couldn�t make it without my parents. If the entire world came burning down, I know they would still be there holding me up. No matter how bad things get, they are my blessings.

As for everyone else� they�ve offered support, promised to help me out in any way, but I�ve got my team. They�re all I really need. If I had to make one request, though, it would be that this story inspires people to give praise to God in the bad times as well as the good; to remember all the small blessings�every time there is no nausea, every time the tire didn�t go flat on the way to the grocery store, every time no one was struck by lightning; maybe even to forgive easier� after all, my story is a reminder of how fragile life really is.

There is so much that can be learned from the cancer world, but I would never wish this kind of pain on anyone. The ones that can handle it and benefit from my experiences, however, make it all worth it.

Friday, August 7, 2009 1:37 AM CDT

*****UPDATE SUN EVE******
We have tickets to NYC to take Erik to Memorial Sloan Kettering on Tuesday on Dr Neglia's advice (spoke with him a few hours ago). He thinks Erik will have the most options there.

Erik was in pain last night in his spine, and went to ER to make sure there wasn't any spinal compression. He is on pain meds now, and is SO disappointed about the trip to Valley Fair he won't be enjoying tomorrow with Mary...

Please pray things go smoothly for travel, pain, treatment options, and most of all it WORKS and Erik is better. He likely has a tough road ahead. Pray for our family too--we hate to leave them with one-way tickets in hand.

More soon. Thanks for your prayers--Much love, Donna

***********************

Cancer is so much more than a medical case. It's a valuable lesson in human behavior under stress. Psychologists have probably examined and analyzed it's effects in all kinds of situations, recorded typical behavior, and teach it in psychology classes--that I've managed to avoid so far--but the reason I feel I don't need to be taught about behavior under stress, is that I can't really get away from it. I live in a cancer environment whether I like it or not, so I naturally learned about it from my own experiences.

By now, I think I've gotten a pretty good handle on it. I remember bursting into tears with my mom on the ride home from Fargo, after hearing that I relapsed for the first time. Now, four years later when my doctor tells me the cancer is progressing into my head and around my hip, I know how to take the information analytically instead of emotionally. I know when to consider my situation carefully and when it's best to distract myself with other things. After all, it would be unhealthy to keep myself in a constant state of worrying.

Better yet, I've also used my experiences to relate to other patients much more effectively. I can teach them my own methods of dealing with pain and stress. While encouragement from any source is greatly appreciated, there's something special about someone who can honestly say, "I know how you feel". This places me in a great opportunity to help others... at least those in similar situations.

By similar situations, I mean cancer patients. Not parents, not siblings, not friends or relatives of people with cancer, but individuals undergoing treatment for cancer. I've experienced cancer as a child and as an adult. I know what chemo tastes like, I know what radiation smells like, I know what surgery feels like... but at one point I realized, that was it. I still have no idea what it's like to see my older brother sick and in pain, too young to understand what is wrong. I have no idea what it must feel like to hold my child ravaged by a disease I have no control over. There's no book that could describe it either.

I've been dealing with cancer for the past four years... but so has my Mom. I have no idea how she must feel each time my doctor tells us bad news. God has given me amazing support through her and thousands of others. I'm secure, but for every person who calls me an inspiration, I hope they understand I would never be as strong without her. It's not my fault I got cancer and put her through this, but it is my fault for every moment I don't remind her of how much I appreciate her.

If you have a moment, please remind her how valuable she is and pray God gives her peace through this too.

************************************************************
MOM'S UPDATE TO THE NBLAST LIST.

Dear Friends,

After an amazing year plus a summer on easy oral chemo Erik
now has progression although still not symptomatic.

He has a new worrisome lesion on his skull (right front
temple area) that has pushed through the bone and is pushing
on the brain (but still contained outside the meninges--not
in the brain). The lesion is 3.7 x 1.2 cm.

Entire spine shows activity on PET and right hip now shows
bone destruction as well (SUV went from 5.8 to 8.9)--amazing
he still does not have pain. He also has new spots on lung
and liver.

He starts radiation to hip and head next week and back to
irinotecan and temozolomide. He wants to try the oral irino
this time.

We sure appreciate prayers for him. He is the usual cheerful
optimistic Erik, and he intends to keep up with college
classes that start end of August, and stay in Bemidji (an
hour away from home).

He took three summer classes and just got back from
Yellowstone trip with college friends, but will have to miss
the Idaho kayaking trip (First Descents--for young adults
with cancer).

He is playing ping pong now with the custodian of the Hope
Lodge. How I love this boy!!!!

************************************************************
PS. If you're considering sushi for the first time, please take it slow. I had a huge sampler plate for lunch and it took me two hours to recover! :S

Wednesday, August 5, 2009 11:03 AM CDT

Erik is getting his scans done now (PET/CT).

Please pray for good news.

We'll see his doctor tomorrow.

Much love,

Donna

Friday, July 24, 2009 8:00 AM CDT

Such an over due update... and so much happening I am doing a lousy job journaling. Not much in the way of thoughtful insight--just the facts!

Erik went to Sonshine music festival with his friends and enjoyed great bands while I was in Chicago at the Neuroblastoma Conference enjoying the most wonderful people on earth. So much to say....

I think we are like POW survivors and truly a band of brothers...we have an deep and fast bond because of our "fellowship of suffering"....we have a shared experience with this disease in our children, so our relationships are instantaneous and go deep.

That was the best.

The presentations by the doctors were incredible, and I am typing up my notes as I get a few moments here and there.

There are always new questions, new treatments, and new ideas. Always reading and searching....

Meanwhile Aron is pretty busy swimming at the lake every day it is pleasant, Paul is trying to finish painting the house, and most spare moments we at least think about playing tennis. Paul and I finally played doubles with a wonderful young couple (high school tennis team stars) and had a blast! We've played singles all summer but I need help with doubles, I am always in the wrong place!

Yesterday was Karls' birthday--20 years old! We all (minus Erik--he had finals yesterday and presentation due today) went out to a Japanese restaurant in Fargo to celebrate and discovered we all LOVE sushi!!! I never tried it, ever. YUM!

Lesa and I leave tomorrow for the cities to see Minnesota Orchestra perform Vivaldi with her music teacher Sarah Drury and all the Drury girls. We can't wait!!!! We'll also hit the zoo and art museum.

Erik finally gets a month long break from school--today is his last day until Aug 24 when fall semester starts. He is stopping by tonight with four friends to eat burgers and pick up a tent and then they'll drive into the sunset (and all night---UGH) to Yellowstone for a camping trip, and they return Aug 2.

Aug 1 we'll see our favorite musical Fiddler on the Roof (with the added bonus of our dear friends David Overly playing the role of Tevye and Melissa Hallaway as Tzeitel).

Lastly (for now) early the next day (Aug 2) we'll head down back to the cities for WYATT'S benefit and we'll get to meet the Mikulak family from San Diego!!! Then two days later we'll back down for Erik's scans...please pray as the anxiety starts to creep up all over again. Erik has been doing well, no pain. Please pray that stupid spot is GONE!

Blessings!!!!!!

Monday, July 13, 2009 10:57 AM CDT

Summer is just flying by! I just got back from a short but intense mission trip to Duluth with church youth group (13-15 year olds) and am still recovering. I can't figure out how we packed so much in SUCH a short time:

-->serving meals to homeless at Gospel Mission;
-->scrubbing walls of gym and painting (and cleaning thousands of dribbles of blue paint off the wood floors since we had no drop cloths....AHHH!!);
-->sweeping and mopping a skate park;
-->joining in local youth group meeting;
-->swimming in Lake Superior and games at the beach;
-->being "homeless" for an afternoon and discovering services for homeless;
-->passing out free water bottles with scripture attached;
-->climbing a tower overlooking the city and harbor just in time to see a man propose to his girlfriend (with our two pastors and bibles handy--they offered to marry them right there--and took photos with them and our whole group!);
-->hike at Gooseberry Falls;
-->waterpark;
-->boat tour of harbor;
-->free outdoor movie;
-->set up for free give-away "garage sale" for homeless with MOUNTAINS of stuff;
-->and lots more I can't remember....

We also unfortunately witnessed a man being beaten in the alley near the facility we stayed at...the male leaders of our group tended to him as the assailants wandered off...while we watched in shock...traumatizing to us all....

Then I got home to the news of Missy and Ryan Morgan. This beautiful faithful family (Les and Missy Morgan and children Heidi, Will, and Ryan) have suffered so much. Ryan was diagnosed with NB in 2004, and Missy with breast cancer in 2007. They died less that 48 hours of each other. Please pray for this family during this unspeakably tragic time...

www.superryan.blogspot.com

And finally Erik's HVA and VMA came back about the same as in May--was 3.2/3.9 and now 3.0/4.1 and Erik remains painfree, praise God.

He is looking forward to Sonshine music fest this weekend, and is enjoying the ONE class (marketing) he is taking this session--only 3 hours of class per day! Much easier than last session! And I am looking forward to the NB conference in Chicago Thursday - Sunday. I will miss having Erik there but am sure it will be an enlightening weekend!

Many blessings,
Donna

Monday, June 29, 2009 10:26 AM CDT

What a wonderful weekend!

We cannot thank you enough for your tremendous support for Erik and his team, and we were incredibly blessed to have Erik's college friends Phoebe, Tabitha, and Elijah join us for the weekend, as well as Mary Virnig who left EARLY and drove two hours through torrential rain to join us in the 5K walk!!! We were so amazed she came since she also had a wedding to attend...wow!!! She has been battling NB for 3 years, and we covet your prayers for this beautiful young lady--her counts need to climb and stay up...please please pray!!!! And pray for her complete healing from NB!!!

Elijah and Phoebe worked many days on the awesome shirts he designed! THANK YOU Elijah!!!

We were so pleased to see Dr Neglia after he finished the 5K run, and saw our wonderful NP Jody! We also saw another favorite�Dr Mulrooney and his adorable children!

Grandma Lou (my mom) joined us for the weekend and we had a blast visiting Como Zoo, Art Museum, walking around the U of M campus, and outdoor market in St Paul and Capitol tour. Fun!!!

If you are on facebook�check out the photos! I�ll post more here too later.

So, a new busy week. Poor Erik has been climbing �his Mount Everest of homework� as Phoebe so aptly put it�it has been very difficult to manage such concentrated studies. We pray Erik can finish strong�papers due and FINALS on Thursday! Next session (month of July, starts next Monday) Erik has one class instead of two�should hopefully mean more summer fun and a little less studying required!!!!

Thank you all so much for your long-lasting support and care for Erik. We are so blessed. Please pray for Erik to remain painfree, and good numbers from tumor marker next week (HVA/VMA) and for Mary Virnig. Also little Mary O�Keefe�she finished transplant not long ago and now has significant disease progression. www.caringbridge.org/visit/maryokeefe

Great blessings,
Donna

PS I encourage you to take two minutes to watch this video of a young man who continues to inspire...even after osteosarcoma claimed him at 21 years old:
http://www.youtube.com/watch?v=7ctji8L5IKI

Monday, June 15, 2009 10:16 PM CDT
Ah...SUMMER!!!

Aron finally made his lake swimming debut (yes the water is c-c-c-o-l-d!!!) and I finally assumed my favorite position of the year--in the lounge chair observing his antics.

But just maybe we are out of our minds. We spent 7 hours driving to attend a 3 hour picnic on Saturday. We had a wonderful day at the Picnic of Hope (U of MN ped onc and BMT families) and had an awesome day together as a family normally spread out between Park Rapids, Bemidji, and Fargo! This was the very first time in FOUR years of treatment our whole family was together doing something "cancer related" and our beloved Dr Neglia and NP Jody got to meet our whole gang--and sibs could put faces to four years of raves about how wonderful Erik's doctor and NP are... ! This means so much to me for some strange reason--that they were able to see our whole happy family together.

It was an absolutely perfect day at a gorgeous park, and after the 6 of us started playing volleyball in the adjacent sand court--soon we had a crowd of enthusiastic players and spectators! Dr Neglia watched some of Erik's fabulous saves and was impressed--demonstrating that THANK GOD Erik is still not having any pain in his hip... (keep praying)...

Although I was disappointed to not get to see any old acquaintances from our long experience at the U of MN, we did meet some new families. We'll get to see some new and old friends again in two weeks at TIME TO FLY!

Speaking of, we are ecstatically happy to have Erik's college friends Elijah, Phoebe, and Tabitha join our fundraising team for the big event June 27!

And like Phoebe says, if you have some loose change--"GIMMEE!!" :) Gotta love her fundraising technique!!!

Go to Erik's Time to Fly page and donate some of it to his race! He hopes to raise $3000 in 3 weeks and the team is up to $1260 so far....

And the BIGGEST news is that an anonymous donor has offered to match donations this week!!! Can you believe it??? Please consider a small donation to help fund a cure for childhood cancers!!!

Blessings always,
Donna

Saturday, June 6, 2009 8:19 AM CDT
A pretty Saturday morning but too cold! Maybe by July I will be able to plant flowers that won't freeze!

If you have a couple bucks burning a hole in your debit card be sure to click on Erik's Time to Fly page and donate some of it to his race! He hopes to raise $3000 in 3 weeks and is up to $340 so far....

Erik is camping, Lesa and I are off to Alex Lemonade Stand at Mall of America (tomorrow) and Paul and Aron will have some dad-and-boy time.

Spencer came through his surgery well, his sense of humor perfectly intact, and is very excited to get out of bed and get out of the hospital for the first time since beginning of March! Pray for his recovery from his amputation and his adjustment...he still has over 20 weeks of nasty chemo to go...I am SO thankful for giant-hearted Steve Symons who has been "by his side" through this whole ordeal...what a friend indeed!

www.caringbridge.org/visit/spencerschwartz

Blessings to you all,
Donna

Tuesday, June 2, 2009 8:08 PM CDT
Bad News x 3 in one weekend.

Amber Dungan died.
Todd Housh died.
Spencer will lose his leg.

I don't understand.

We pray so hard for things, and yet God sees a different way to answer us...a way we cannot fathom. We hurt viciously in the process, the pain is excruciating, but know that ultimately there IS a rhyme and a reason. We have a Creator and Savior Who knows the End from the Beginning...

Confidence in His Wisdom is the only way to maintain my sanity....

Erik met Amber at Camp Sunshine Wisconsin in Sept 2005 when he was a leader of the "Tweens" group. She was still recovering from a tandem (double) transplant for poor prognosis Ewing's Sarcoma. She was extraordinarily beautiful, even though her hair had not yet returned. She loved Erik and he was deeply charmed by her as well.

She relapsed sometime later. Crushing. She has been a stunning and brilliant example of a beautiful young lady fighting an ugly foe with grace. She died at 14, on Saturday. (carepages: amberdungan)

Todd Housh was a dear friend when we lived near Boston. Todd and Cara were members of our little church, and they were the first visitors Erik had at Boston Children's immediately after his diagnosis. They cried with us. Cara, a physical therapist, had a Merck Manual I had scoured for clues to Erik's diagnosis over several weeks of tests and inconclusive results. Their oldest, Ty, was the same age as Erik, 6 years old. Todd was doing post-doctoral research in geology at MIT. He went on to teach and do research at University of Texas at Austin, and was stricken with Parkinson's disease. Cara and Todd have 12 children ranging in age from 24 down to 3 years old. Cara�s parents were well-loved members of a rural community near Carthage Missouri, and didn�t show up for church one morning last October. Cara�s brother found them brutally murdered, and no suspects have been found to date. Cara was taking care of business with her brother in Missouri and got a call on Saturday that Todd was dead. He was 47.

Spencer, 17, a junior in high school, was moving a drum at school on March 3 and his femur snapped. He soon landed in traction at the U of MN ped onc floor, undergoing round after round of nasty chemo (Erik knows what is nasty and what is not�this was Nasty Chemo). We have prayed fervently for Spencer to be cured of his cancer, and to keep his leg. This story is so similar to Erik�s friend Steve Symons. Spencer just found out after three months in traction he will lose his leg.

God have mercy.

How do we process this? We grieve, that is for sure. But how do we make sense of the senseless? I learned early on, that trusting in God�s Wisdom is the only hope we have. Otherwise there is only chaos. God help us. We need a Savior.

Trusting Him in the grief�
Donna

Monday, June 1, 2009 4:04 PM CDT
*

Please pray for our friend SPENCER SCHWARTZ!

He broke his leg March 3 and has been in traction for THREE MONTHS at the U of MN with osteosarcoma, and just found out they cannot save his leg....

Erik's friend STEVE SYMONS went through the same thing in 2005...

heartbreaking news

Please check out Erik's Time to Fly page for cancer research funding HERE!

What a glorious day!! And I have spent most of it on the computer with tedious work--what a doofus.

Going outside now--but wanted to update quickly. Erik is crazy busy getting ready for summer school. He starts next week after camping for the weekend with friends. He'll be in classes SIX hours a day.

He has three fundraisers for cancer research and then the 4th of July weekend off. Then the second summer session starts and he will take one class (only 3 hours per day of classes). Then he plans to go on a road trip to Yellowstone with Intervarsity friends, after that a week of scans and tests at the U, then a week in Idaho kyaking with "First Descents" --a camp for young adults with cancer...then starts Fall semester a couple days later. Crazy boy!

But he loves it.

We had such a nice day on Saturday. Karl was home from Fargo so we all went to Bemidji to take Erik a new bed, he rearranged his little space to facilitate studying and sleeping--but not at the same time! We ate out for lunch with Grandma Lou, then went to my sister Dawn's for pizza dinner. Nice day!!!

Every time we talk I ask him about pain concerning the new spot in his hip, and he says "none," which is good.

Please pray he never says "yes" to the pain question....

Blessings!
Donna

Tuesday, May 19, 2009 9:53 AM CDT

Trip canceled to Ireland...we haven't had this happen before with military "hops" but the AF has the prerogative to cancel missions! Oh well.

Erik wrote this on the way to the cities for his medical tests last week...profound.

*

The Room

Spring semester is over, and I rewarded myself for an excellent year with a new iPod Touch. Our house has recently gone through some major changes too. First, we got a new couch. The living room is getting a little crowded, but at least guests will have some place to sit around the TV now. Second, another of our housemates was leaving. He graduated last year, but stuck around to finish a few classes and teach at the high school. This meant the second largest room in the house was now open.

It's on the first floor, adjacent to the living room and the kitchen, with a large closet and an included queen-sized bed that our late housemate was leaving behind. My current room is the smallest in the house, on the second floor, farthest away from the kitchen it could possibly be, with a tiny window facing a streetlight. Naturally, my heart jumped a bit when I realized I could be upgrading soon. I waited for an opportune moment to start moving all my stuff into the new room, but one morning I found the room was no longer vacant. A new housemate had moved in, with his stuff all over my new room, and was sleeping on my new bed.

I panicked. I was supposed to move in here, not him. I had lived in the house for the whole school year, and I deserved the room. I had already talked to the other roommates, and it was decided. I was moving in. I had more stuff anyways so I needed the extra room more. You have no idea how much this bothered me. My friends even noticed. I had to take off and drive for a half an hour to think about what to do. I'd been here before and I knew conflict was a disaster zone for me. Arguments had pushed family, friends, even my wife away because I didn't know how to handle them correctly. I needed that room, though! There had to be a way to get what I wanted with minimal casualties... don't worry. I snapped out of it and started praying.

What never ceases to amaze me is no matter how blessed people are, it never stops them from demanding more. I am unbelievably blessed. All my needs are covered. Just maybe that room wasn't a real need after all. Maybe I just wanted the status of owning the second biggest room in the house. Maybe I just wanted the upper hand in this situation... was that really more important to me than this guy who spent all night sick with the flu?

I came to college to gain two things: knowledge and maturity.

The knowledge side is coming along beautifully. One lesson I've used almost everyday since my first economics class is opportunity cost. The idea is to try to find the hidden costs of making a choice to determine whether it is really beneficial or not. If you approached a decision based simply on analytics, you might find that room B is larger than room A, you have the right to it, it has all these obvious benefits and therefore is the obvious choice. The opportunity cost, however, is the potential repercussions it could have on the relationship with this new housemate, asking everyone to move my stuff for me since I would be gone the rest of the month, giving up the peace and quiet the first room offered, and presenting myself as a selfish, immature child.

The maturity side is harder to see. It only shows itself in difficult situations like this. The lessons learned here are not written on any syllabus or taught by any BSU professors. They are taught by a Professor with more credentials than any other, out of a Book that I never study enough, in a Course that will take a lifetime to complete. The class size has a maximum capacity of one, because it was designed just for me. What I've learned so far is that sometimes I can be unbelievably selfish, competitive, rash, impulsive, and assume the worst in people... but it's ok. I've done my homework, and the first class project is to change my own heart.

This story has nothing to do with a room--it would be silly if it were. It's all about my heart. The greatest commandment wasn't to get all you can here, but to love people, to store up treasures where it matters, to sit in the lowest place, to die to yourself. In any situation, forgetting to love people more than yourself can become the biggest opportunity cost there is. I don't need a need a new iPod, I don't need a new room. I need a new heart.

~Erik

Friday, May 15, 2009 11:39 PM CDT
Wow am I tired. And feeling badly Erik has had to cheer me up. We were all pretty excited Erik did get another 4.0 for spring semester.

Erik has a new spot on the PET. This is unexpected and unwelcome news. His PET scans have been clear for over a year.

What could it be? Well, we all agree a biopsy of the spot would be difficult and pointless. We'll know on the next scan (planned for August)...and check catecholamines again in July. He'll continue with the planned adjustment to the oral chemo combo.

The good news is that his doctor was able to get excellent marrow samples and they contain less than one percent tumor and some cells show maturation.

We just need to pray the new spot goes away!

Erik starts COMBAT "year 2" next week. No more etoposide and oral cytoxan replaces the temozolomide, and every thing else stays the same (celebrex, accutane, and gemfibrozil).

Erik and I had a great time together in the cities as usual and he even gained five pounds eating out so much! For example, after he woke up from sedation for biospies and ate lunch in the hospital he then met Mary and ate lunch again at the Persian restaurant! Then he ate a huge dinner at Hong Kong Noodles (grossed me out though--he ate smoked eel and pork--ick!)

We made it home in time for Lesa's play Tom Sawyer.

Still planning to leave for Ireland on Monday...

As Lady Macbeth said:
�Out, damn'd spot! out, I say!�

Please pray the spot goes away.

Blessings,
Donna

Tuesday, May 5, 2009 12:16 AM CDT

UPDATE Monday May 11

Another anniversary is upon us. Four years ago on Mother's Day Erik came home from college to surprise me with a visit (and a treasured figurine), and he was pale and exhausted, and aching in his legs and hips...

His relapse was confirmed a couple days later, but I knew the minute I saw him whatever it was--it was bad.

He spent his whole week of finals in the hospital. Here he is four years later vibrant, happy, and acing all his classes! Who would ever think to pray for such great blessings?

What a wonder to be sharing another Mother's Day together. How I love this boy!!! How I love my family!!! Glory to GOD!!!

We are leaving now for the cities for a week of tests...thanks for praying dear friends!

*

It is May already! The snow is suddenly gone and the yard needs attention! But with lots of graduation activities and tutoring, finishing up chemistry and physical science classes (and a stack of lab books and final tests to grade), and packing for our trip to Europe...the yard and garden will just have to wait until June!

Erik had his last final today and is pretty sure he has another 4.0 semester. He will relax a little with friends and then come home this weekend. He and I will leave for the cities for a week of tests, scans, and biopsies. He'll have physical therapist evaluation, hearing test, echocardiogram, physical, labs, PET/CT, bone marrow biopsies, and consult with his oncologist, so a busy week. I appreciate your prayers specifically for good marrow samples (his marrows are very tough to get and we haven't gotten good bilateral samples in over a year) and of course ALL GOOD RESULTS!!!

While we are in the cities we are hoping to meet up and have dinner with friends who were missionaries in China and are now planning to go to Italy for missions work--they are on a mega-crosscountry trip to raise support and and thankfully our paths should cross!

When we return from the cities (hopefully with all good news!) we'll see Lesa's play and Paul and I will have one day to prepare for leaving for Ireland with my parents for two weeks. Erik is babysitting Lesa and Aron so it should be an adventure for all of them....will they remember to eat? Will they wash dishes? Will they take out the garbage?

Hmmmm, will you pray for them???

A few days after we get back Erik is going on a camping trip with friends and then starts...summer school!

Thank you dear friends for your many prayers!

Many blessings,

Donna

PS Rejoicing for our friend Steve Symons! He has received "all clear" results from recent scans, and that is after a terrible scare last spring with what looked like very probably lung metastases from the osteosarcoma. PRAISING GOD!!!!

see www.gosteve.org

Monday, April 20, 2009 7:34 PM CDT
Happy Monday!

Erik was the star of at least one video at the Newsboys concert last Saturday...(middle guy waving arms!)

see
HERE

I accompanied our youth group to the same concert and it turned out to be quite an adventure. The tire on the van blew and then caught on FIRE a couple blocks from the concert! Fire trucks and all...

My ears were still ringing the next day from the concert--not the tire!

Ergo, Erik will be getting another hearing test during the next series of tests at the U of MN!

But otherwise it was all good.

Erik found out he qualified for a SMART grant (nice surprise, grant for science and technology with high GPA jrs and srs) and he is looking good for finals.

Please pray for a great finale to his semester AND great results from his next scans and tests...May 11-15.

Thank you dear friends,
Donna

Thursday, April 9, 2009 8:15 PM CDT
Please pray for Brave Erin's family--

She battled long and brilliantly.

She lived well.

www.erinbuenger.blogspot.com/

To get an idea just how great Miss Erin is, this is a MUST READ:
I Hope This Cheers You Up

Saturday, April 4, 2009 10:36 PM CDT
****
Tuesday Update:

Erik's counts are great as usual--HGB 12.1; WBC 3.4; PLT 150; ANC 1300; trigs still high at 233; and liver function all normal. This is on oral chemo--so pretty easy stuff.

He has a LOT of projects due and tests this week. After such an exciting time last week I am praying he can catch up and do well in all his schoolwork!

We were able to add a physical therapist consult for next series of tests at the U--the "exercise" session at the survivor conference got him stoked--so he will get an exercise prescription tailored to his history and current meds. Hey, we all wanna be Lance, right?

Oh what a day. What a weekend. And it isn't over! I still have to deal with turning 49 tomorrow. Much better than the alternative, I always say.

Erik had a fantastic visit at Federated in Owatanna with the Computer Science group from BSU, and had counts and port flush at the U afterward with minutes to spare as the clinic was closing--he ran all the way from the Hope Lodge to the Cancer Clinic. He also figured out how to get one empty med with no refills renewed, after hours. I am so proud of him! Paul, Lesa, Aron and I met him for dinner at the Caspian (Persian, YUM) and I stayed with him at the Hope Lodge so we could go to the Survivorship Conference today.

Paul and kids stayed near the mall and they headed back to Park Rapids while Erik and I had a wonderful day (albeit a little tired, since he finished a take home test last night at 2 am-ish, with the light on, in my face) because we finally got to meet MARY.

We have been following her story for so long--over 2.5 years--she went through transplant at the U after Erik. She is the oldest of four. She lives in a small rural community in MN. They had a tough time deciding her correct diagnosis. Many more similarities for a very rare disease!

We are VERY impressed with the tenacity of this beautiful young lady! She is on the SAME chemo that wiped out Erik for nine rounds (18 weeks, or 90 days in the clinic)...and she is in college fulltime! She also traveled to San Francisco for MIBG (targeted radiation) therapy with chemo and another stem cell rescue last year in the middle of her first year of college. We already knew she was amazing. She is even more amazing in real life!

So we are back home. Erik is busy with more homework and I need to get ready for eighth grade Sunday School class!

Blessings to you all,
Donna

Sunday, March 29, 2009 9:09 PM CDT
Sunday evening blah....two sciences classes to prepare for and I would much rather go straight to bed! Tired!

Karl came home from Fargo this weekend and we are praising God the dikes seem to be holding for the most part. I remember especially liking the story of the boy and the dike when I was little, then after living in the Netherlands as a teenager I appreciated it even more! Now 24 hour surveillance is ongoing, we continue to pray they hold. His apt and work campus is dry so far. His boss sent everyone home last Thursday.

Erik is doing great in school and life but not sleep. He still does NOT have days and nights figured out. I tattled on him to his oncologist, hoping this will create more pressure for him to at least TRY the melatonin. Truth is he has not tried it once! Grrrrr.

He had a great four days of celebrating his birthday with different get-togethers and we were SO happy he squeezed us in for a turkey dinner last Sunday, with Karl home too. He went to the cities for a Chris Tomlin concert yesterday, and is going back Thursday for a trip with a group of computer science classmates to check out Federated in Owatanna. Instead of recruiting on campus they invite a group down every year and pay for travel, food, and hotel.

After the tour at Federated on Friday, he'll head to the U of MN for labs and port flush--and then the Survivorship Conference on Saturday.

Busy guy!

He applied to First Descents camp in August in Idaho (for young adults with cancer) and will be going to school fulltime this summer.

Ever thankful for your prayers!

Donna

Wednesday, March 25, 2009 3:10 PM CDT
Perspective really does color our world!

In 1991 when I first heard the word neuroblastoma I read in a just-published pediatric oncology text (pre-internet, standing in the isle of the Harvard med school bookstore--no way was I going to buy the $110 text that I could barely understand a word!) but I did understand this:

"In the past 25 years there has been no increase in the survival rate of metastatic neuroblastoma."

Several weeks later, after the first two induction cycles, Erik had no response. We were given the news point blank that Erik would not survive. No maybes.

Everyday since then is a miracle to me. But I also grieve terribly that of the 12,000 diagnosed since then, there have been 5,000 lost to this disease leaving behind many more parents and siblings to grieve....

*

Fast forward to last week (on Erik's birthday no less). Late breaking news: a long-running phase III trial that opened in 2000 and randomized the use of a chimeric antibody ch14.18 after transplant in hundreds of children with NB had early results show a significant survival benefit so that the trial has been stopped and all kids eligible will get the antibody now.

This news has sparked a storm of emotion and some surprisingly virulent posts on our neuroblastoma listserv.

So na�ve ninny that I am-- I confess I rejoice over any news of any progress against NB. I don't care where the news comes from. I was equally ecstatic about the serendipitous find of nifurtimox and (insert long list here of anything that ever worked against NB).

So I am guilty of having low expectations? What expectations should I have? My heart sank over the 3891 and the 3973 curves (two prior phase III studies). And the non-results of purging. And the fact the impressive CEM-LI pilot results were not repeated in the 3973 curves. I really expected the ch14.18 trial to be a bust, and bristled a long while over the astronomical amount of money and time spent on this trial. So the shock of positive results and early closing really knocked me off my chair!

Seems to me that high-risk NB is a pretty tough cancer. "Heterogeneous" is the understatement of the millennium.

If the ch14.18 has been found to increase survival rates, however incremental, I'd like to express my joy for the moment. And since my skin is too old and thin to take the punishment for my unpopular happiness--I'll just smile here in my little corner.

I hope very much someday we will see the same success with NB that the kids with ALL have today. It will no doubt take all great minds who DON'T think alike to get there. I am SO thankful for everyone working toward an answer. The cutting edge is certainly in finding answers for refractory and relapse, but reviling those still trying to figure out how best to treat frontline kids today doesn't help much. Of course we all want a homerun right now, but if we have to inch our way there in the meantime forgive me for cheering rather than railing.

I did find this 1997 article highlighting the history of the success of ALL treatment. Looks like they had some "incremental" gains over many years as well as the homerun 70's decade... By the way, the 80 percent five-year survival rate on the graph for 1990 is the same today. So they have not seen any further increase in survival rate for 19 years.

http://bloodjournal.hematologylibrary.org/cgi/content/full/90/11/4243

Passion and commitment to cure NB is good, and I truly admire those leaders on all fronts, as generals fighting a great enemy with individually (and brilliantly) crafted armies and arsenals. But when the generals turn on each other to bite and devour-- that leaves a wake of turmoil and those hurt most are those who have already lost everything in this war.

Peace and blessing,
Donna

Sunday, March 15, 2009 8:09 AM CDT
*

UPDATE TUESDAY MAR 17

BIRTHDAY NEWS FLASH--Look who is turning 24 on Thursday March 19th!!!!

HAPPY BIRTHDAY ERIK!!!

and....

Breathing deeper!!!!

Erik's catecholamines (tumor marker) ARE DOWN!!!! HVA and VMA are both 2.5 (down from 3.4 and 3.3!!!)

I confess I was silently dealing with increasing panic since his numbers had crept up very slightly the past 6 months. His HVA and VMA numbers run very low (ie even when he had tumor causing pain his numbers were not sky high--often within "normal" range) but seeing them DROP is a huge relief!

PRAISE GOD!!!

So April Erik has labs and May full restaging. Thank you for praying!!!

******

A very dear lady (Connie) who has been a long-time encourager during Erik's fight against cancer emailed me about a relative who was just diagnosed with bone cancer. He is at the U of MN too.

Please pray for Spencer Schwartz, a talented 17 year old (junior in high school) who is in the hospital with a broken femur, in traction, and now getting the most wicked chemo combo ever concocted (and trust me Erik knows what is wicked chemo and what isn't!). Spencer has osteosarcoma-- and the very same thing happened to Steve Symons in April 2005. I just can't imagine going through horrible chemo immobilized...Steve knows! I am so thankful for his encouragement to Spencer and his family. Steve is doing great (his website gosteve.org is below in links)!

Please pray for comfort and complete healing!

www.caringbridge.org/visit/spencerschwartz

Erik and I met Spencer's wonderful Grandma Pat briefly on Friday, and Spencer was resting. We are holding up this dear family constantly in prayer!

Erik is scrambling to get assignments finished now that spring break is over! He had some fun get-togethers with friends (pizza and x-men movies, snowboarding, and cooking new and exotic foods).

His counts are great, and we are waiting to hear how catecholamines are looking. He is due for labs in first week of April, and then full work up (restaging) second week of May. He has PET/CT, biopsies, and echocardiogram scheduled. Please please pray his doctor can get a good marrow sample! He has not had a good bilateral sample in a couple years! A year ago the doctor got a sample from one side. This is the best indicator of disease status for Erik when his scans are clear (and we pray fervently they continue to remain clear!!!)

Many blessings!

Donna

Thursday, February 26, 2009 11:08 AM CST
An Overdue Update on Erik!

Erik is doing incredibly well. Our visit to the U three weeks ago was wonderful. Selfishly I cherish every minute of that time with Erik now that he is an hour away at BSU and very very busy! He has an amazingly full slate�studying hard to stay at the top of his classes, leadership role with InterVarsity and four or five nights a week of activities and Bible studies with IV, volunteering at the Boys and Girls Club with the Computer Science Club, working out, snowboarding, hanging out with friends (he particularly enjoys the culinary talents of his Malaysian friends, and hearing he is eating well always makes me very happy!). He is maintaining his weight which is a big deal!

Pretty amazing for a guy taking assorted chemo pills everyday, huh!

His sleep pattern needs a lot of improvement though, and the only thing his doctor is concerned about right now. He has 8 am classes every day and most nights isn�t asleep until 3 am. Next step is trying melatonin (Erik previously tried three other sleep aids that didn�t work at all�he took a Lunesta once and still stayed up until 6 am). I think he has delayed sleep phase syndrome, or non-24 hour sleep phase. His doctor actually published a study recently on sleep in survivors of childhood cancer treatment: Feb 2008 �Fatigue and sleep disturbance in adult survivors of childhood cancer: a report from the childhood cancer survivor study (CCSS).�

When we were in the cities for his appointments we saw his awesome NP in the cafeteria (she was on inpatient service�we would have sorely missed seeing her!) and then ran into the physicist who worked on the delivery of total marrow irradiation (TMI) for 6 years before it was first performed on Erik. Needless to say Erik represents a focal point in his career! He was very excited to see Erik, and shared passionately how much more funding is needed for improvements in the delivery TMI (ie automatically tracking minute movements to spare the tissue damage when radiation hits outside the bone fields).

Then we went to see if we could meet little Wyatt Kamp who was checking in for BMT on the transplant floor. We met his mom Eileen early in his treatment, but Wyatt was sleeping then, and his dad Tony wasn�t there. Wyatt is the cutest little guy imaginable�I can sure see why everyone falls in love with this adorable 11 month old!!! His Dad Tony is an incredible man too�and although we didn�t get to meet big brother Eric (4 years old) we can tell what a phenomenal kid he is from the precious parents he has�what a beautiful family. PLEASE pray for Wyatt�he has had difficulty from day one, and is still on a vent. I can�t imagine how hard it is to face such radical treatment for such a tiny little guy.

We also finally got to catch up with Erik�s transplant doctor (principal investigator for the first TMI transplant ever performed, so Erik represents a big milestone for his career as well!) He hadn�t seen Erik in 2.5 years�since he broke the very hard news to us of Erik�s second relapse a year after his transplant. He is regularly updated on Erik, but was overjoyed to see with his own eyes how great Erik looks! It was wonderful to see him!!!

Erik was constantly complimented for his crazy ski hat�looks something like yellow and black dread locks! (See bottom winter photo in photo album). Erik started counting the compliments�seven, eight, nine�and when we walked back into the Hope Lodge entrance way there was quite a crowd where a very little boy loudly announced:

�You�re�.Spider�Head!�

It was SO funny!

We went to see him in Bemidji last weekend to bring him his coat (left at home accidentally), meds and paperwork. We were so pleased to see how great he looks, and how CLEAN he and his housemates are keeping their house! I was very impressed!!!! His tiny room is well-organized and cozy, and he loves it there. We took him out for a big dinner and after we left he went to his friend�s house to eat Malaysian food!

So all is well, and we praise God everyday for His care and mercy.

Erik plans to snowboard near Duluth over spring break, and will go to the U of MN in April for a quick visit and repeat of catecholamines (tumor marker) and go to survivor conference. Then in May he�ll be restaged with scans and biopsies. Please continue to pray for him! If all is well, Paul and I will accompany my parents for a two-week visit to UK and Ireland! Erik has consented to hold down the fort with Aron and Lesa while we are gone�and he plans to continue with his studies this summer. I am hoping he can squeeze in First Descents (adventure for young adults with cancer) in August.

Blessings to you all! Thank you for your prayers!

Donna

Here's some perspective on Erik's long journey--Erik wrote the following post about a month after learning of his second relapse (referred to above) and what a PROFOUND answer to prayer he is enjoying today:

Friday, December 22, 2006 5:36 AM CST

Last night in the hospital. Transfusions are all over. Two down, eight to go. Now I just have to wait to feel better. Before that happens, it's just one more sleepless night in the hospital... what is this doing to my brain?

I've been called a lot of things since I started treatment. "Hero" "Awesome" "an Inspiration" "Impressive". Everyone knows I have a huge pain tolerance. I just don't like to complain. I'm not going to lie though--it's hard being sick all the time. All I want to do is go back to work, go to school, have a normal life. That seems so distant now. So why didn't I get a normal life? Why did I have to be a "hero"? Always wonder just what it is that I'm doing that makes me a hero anyway. Just because I'm bearing all the pain? Or is it because I keep surviving? I don't think anyone enters the battlefield assuming they are going to be the one still standing at the end of the day. And what about all my fallen comrades? Does anyone know how guilty it can make you feel?

Cancer doesn't just mess with your health--it changes your whole mindset. Suddenly all the goals and ambitions of everyone living out the "American Dream" seem so pointless because this close to the edge, you know exactly how much good it's going to do you once you are gone. You can't help but want them, like everyone else does--that's what society trains you to think. But what I really want is something that will not go away no matter what. I can't describe how much it helps me to know that so many people care about me and pray for me. It's something I think about all the time. Human relations are so much more valuable than anything material.

Cancer can do two things to you: make you stronger or make you insane. I believe I've tasted both. But if God did this for a purpose, it's going to be pointless if I don't figure out a way to make the experience useful. I can tell you it has already made me a more compassionate person. It means so much to be able to help someone out--to give back for everything that's been given to me. Even the little things that mean so much... like having a good friend to talk to late at night when you really needed it. It�s not that hard to completely brighten someone�s day.

Thanks for reading this, and pray that I get more chances to help others, because that�s what I really want.
~Erik

Sunday, February 15, 2009 7:43 AM CST
Please pray for 10-month old Wyatt Kamp. He is in BMT on day 1 and is on a vent.

www.caringbridge.org/visit/wyattkamp

Thank you

Donna

Friday, February 6, 2009 7:28 PM CST
UPDATE
Preliminary read on the CT is that there is no mass causing the protrusion on the left side of his back...his right muscles are atrophied from the radiation years ago, so his muscles are asymmetrical.

HVA = 3.4 and VMA = 3.3

Counts were awesome!
WBC 3.6
HGB 13.3
PLT 188
and trigs 240 (should be under 150)
kidney and liver function all normal!

Plan is to continue on oral chemo (etoposide, temozolomide, accutane, and celebrex) until May and try bone marrow biopsies (hope hope hope for good samples!) and full body PET/CT.

*

Well, always something interesting. All went smooth today, but with a longer-than-usual wait to see our beloved doctor. But no complaints here! We are so thankful to have such a GREAT doctor! We contemplated that he had some very tough stuff to deal with before us...once he spent over 2 hours with Erik after learning of his second relapse (not to mention the hours he spent pouring over Erik's complicated history before meeting us!)...and I am sure someone else was waiting on him then, too....

Erik mentioned in passing about his side hurting (a frequent question for cancer patients is "any pain?") and Dr Neglia carefully examined his lower back. The muscles on the left side are much more prominent than the muscles on the right side (the side that was in the radiation field when he was 7) and Dr Neglia wants to be sure there is no scary stuff going on, so he ordered a CT scan for tomorrow morning. So much for trying to avoid too many CT scans (which is why we had planned no scans this time).

Since Erik had a reaction to the IV contrast last time, he has to be premedicated tonight and tomorrow with prednisone and benedryl...which is why we couldn't do the scan today.

We'll hear the preliminary results of the scan tomorrow afternoon, as well as the HVA and VMA results.

Otherwise, we have had a wonderful time together this visit! Erik has been so busy at school it is AWESOME to have him to myself to catch up. I will be filling in more on that later!

Please pray for a boring CT result!

Blessings
Donna

Sunday, February 1, 2009 5:06 PM CST
No news here is really good news...Erik is busy back at school working hard and enjoying a myriad of activities with his friends--especially snowboarding! He is at an Intervarsity retreat this weekend.

Erik and I will be going to the U of MN this week for his lab work, catecholamines and visit with Dr Neglia. If things continue to look good, he'll probably continue on this regimen another 3 months...which will complete one year in May.

We beg you to pray this miracle continues. So much bad news in the NB relapse world has been so heartbreaking lately, and the amazing stories of response (especially prolonged...) are few and far between. We have been praying especially for Anna O'Connor and Nick Franca (Nick just learned of new spots, and he is planning on attending college next fall...) and little friend Sam who learned of progression not long ago...

Many blessings to you and we'll update after Erik's visit at the end of the week!

Donna

Sunday, January 11, 2009 8:03 PM CST
*
UPDATE--
Check out the wonderful counts from Monday:
WBC 5.1
HGB 11.8
PLT 200
and triglycerides 211
(amazing considering the diet on the cruise!)
liver and kidney function all good!
whoo hoo!

*
What a dream celebration!

We thoroughly enjoyed every minute of our trip, and I hope my parents enjoyed it every bit as much as we all did!!! From watching the temperatures rise as we slowly made our way south, then spending a couple days in Galveston with my parents and my brother David and his family, and nephew Nik and his girlfriend, and friends of the family. We had a wonderful time cruising with them all to Progreso and Cozumel.

Altogether there were 20 of us on the cruise! Erik gained 5 pounds (albeit an expensive way to gain weight!) and so did Aron. Lesa gained 3 pounds and Paul and Karl won't weigh themselves. I think I came out even! (Whew!) The food was incredible, Aron swam for hours on end and loved the kids activities and is quite tan, Lesa and Erik got in some great shopping time in Cozumel, and we all snorkeled and kyaked (not sure that is a verb). Erik saw ruins near Progreso and the rest of us swam on the beach.

It was wonderful!!!

The drive back was much better than anticipated, and we praise God for no car mishaps (with almost 200K miles on our old van!) and a perfect weather-window for driving. We made it back in 24 hours driving straight through getting home 10 am today... Erik drove some pretty yucky snowy and slippery roads during the worst time--4 am to 7 am...

So bedtime for all of us and back to the grind tomorrow. After we got Erik's laundry done he picked up meds and headed back to Bemidji for school. I hope he isn't too exhausted for first day of classes tomorrow. He also has to get his books and get blood work done and port flushed.

Thanks so much for the encouraging words and well-wishes for my parents! They are truly VERY amazing and wonderful people and we are so happy to mark this very special anniversary with them!!!

We appreciate your continued prayers for Erik's health and strength for this semester. He did get a 4.0 last semester! Please pray the medicine he is on continues to work and keep the cancer on the run. We'll see his doctor first week of February but no scans or biopsies.

Blessings,
Donna

Thursday, January 1, 2009 9:00 AM CST
Happy New Year!

We leave today for a rendezvous in Galveston TX with my parents and family and friends to celebrate and embark on a cruise to Cozumel for their FIFTIETH anniversary! Congratulations Mom and Dad! What a great event to celebrate and what great people to honor!!! Considering the -27 temp here yesterday morning...we're all anxious to head south!!! It's 80 degrees in Cozumel baby! (Coming back will be HARD!!!!)

While we continually hurt for the families who have lost their children and those who are now suffering dreadfully, we are also continually amazed and thankful for everyday that Erik has health and strength! He did fantastic last semester with the highest overall scores in some of his classes, and he was able to snowboard quite a bit over the break so far. Look for him on the slopes every weekend til April!

He continues to do well with his medication, with only a few annoying blips here and there gettting the prescriptions filled. He has counts and port flush in Bemidji now only once a month, and that is working out well. His housemates are great, and he has some wonderful friends from Malaysia he loves to hang out with!

We'll get back just in time for him to start the spring semester and for Karl to get back to work on Jan 12.

Erik has next visit first week in February with his doctor, and right now no scans or biopsies are planned (makes me a little nervous since HVA and VMA run very low for Erik--always nice to have SOLID confirmation the disease is no where to be found!)

We appreciate your prayers SO MUCH!!!!!!

Blessings for 2009!!!!

Donna

Monday, December 15, 2008 5:59 PM CST
Blessings!

Snowed in, with power and food. Life is so good!

But then there's the aching back from shoveling--ugh.

Karl came home Friday night so he could see Lesa and Aron in the homeschool drama "Night at the Theatre" performance, but he had to go back to Fargo on Saturday because of the impending storm. It's a good thing he left with highways closed around Fargo on Sunday, and we were buried with snow today!

It is so nice he and his roommate can walk to work since they live so close to their office!

Erik had his economics final today, and I pray he gets the A he is shooting for on his accounting exam Tuesday. After those, he has business applications and computer science --he has a solid A in both! He went to a special musical dinner last weekend that was a fundraiser for the music program at the University. He said it was wonderful (his music-major roommates and friends were performers and waiters).

We look forward to his return home after finals are done, and then Karl will be home for a few days before we leave for Texas and the cruise!

We are exceedingly blessed, and thankful for the miracle of Erik's good health.

My prayers are with all of you who have steadfastly supported Erik through such a long battle. I pray that God will bless each of you with His Spirit and re-create you, and transform every home! His handiwork in us is evidenced by healed hearts, deep love, extreme joy, and true peace. May God grant you these precious gifts through His son Jesus.

Please pray for the little ones running out of options...our hearts break for these families...and the many who try to celebrate without their children here.

Much love,
Donna

Tuesday, December 2, 2008 7:24 PM CST
Still Thankful!

We had a wonderful time with Erik and Karl home--enjoying Thanksgiving gathering at my sister's house and Erik squeezed in a visit with college buddies in St Cloud and did a little shopping as well! Did he waste time sleeping? No way! We played games and enjoyed Karl's piano playing--he is piano-starved at the moment in Fargo. I keep telling him to play on the grand piano in the lobby of the hospital where Erik spent so much time when he first relapsed.

We managed to stay well so far (seems that MANY people are suffering from the flu) and Erik is back at school full swing. He has been working out regularly and enjoying racquetball with friends which thrills me! He has a "worshipful art" activity to plan for InterVarsity on Thursday--should be interesting. He gets counts done and port flushed next week in Bemidji--always hate switching to a new place for this stuff. Hope they get it right (faxing results to U of MN and correct tests, etc.)

As we approach the cold weather and repeated commands to "be joyful" I can't help but think constantly of the long list of young families we have come to know and love that have lost their sweet children this past year. How are they supposed to deal with this? Please pray for them all.

Much love,
Donna

Wednesday, November 26, 2008 12:03 AM CST
THANKFUL!

Erik is home and Lesa and Aron are enjoying his company playing Little Big Planet.

I am cooking his all-time fav foods (since he was 2 years old there was nothing Erik loved more than turkey and stuffing!!!)

Erik was hospitalized in 2005 and 2006 over Thankgiving. He was so sick in 2005 from starting transplant he barely tasted anything. In 2006 his turkey was STOLEN from the patient fridge (but the highlight was having Steve and Libby visit--Steve was hospitalized in 2005 too, during his long battle with osteosarcoma).

Karl comes home tonight after Lesa has gymnastics practice and we'll eat and play games!

Erik was a tad concerned about his last Econ exam. He didn't need to be--he got the highest score (225 out of 250 points!)

We are all very very thankful for everything, and pray sweet blessings upon you all.

Donna

Saturday, November 15, 2008 5:05 PM CST
BSU student defying the odds, keeps beating cancer
Bemidji Pioneer Press, by Bethany Wesley

Scientifically speaking, Erik Ludwinski should not be alive today.

Three times he has fought the same cancer. He twice has beaten it and is winning a third battle today.

�Even the doctors say it�s a miracle,� said Erik, 23, a Bemidji State University junior majoring in computer information systems.

Erik has Stage IV neuroblastoma, a cancer of the bone marrow. Diagnosed at age 6, he was cancer-free for 13 years before it returned in 2005 and then again in late 2006.

He was the first in the world in 2005 to undergo total marrow irradiation, in which every bone in his body was infused with high doses of radiation.

Erik was one of three patients who were highlighted at the University of Minnesota this month during a celebration in honor of 40 years of successful bone and marrow transplantation.

Today, his scans show that there is less than 1 percent of tumor growth in his bone marrow.

�You don�t choose cancer; cancer chooses you,� Erik said. �You can either ignore it � or accept it, and then life gets a whole lot easier.�

The first fight

Erik was 6 years old and living with his family in Massachusetts. He began to have sleepless nights as an unknown pain overtook his bones.

�We knew something was wrong,� he recalls.

Referrals from one doctor to another didn�t result in any immediate relief. It was two weeks before someone suggested that it might be cancer.

He ultimately was diagnosed with Stage IV neuroblastoma, a childhood cancer.

The following year was all but a blur:

9 rounds of chemo

5 surgeries

16 doses of radiation

1 bone marrow transplant

17 platelet transfusions

20 red blood cell transfusions

136-day hospital stay

70 days at the clinic

But it worked. The tests and scans came back clear. The cancer was gone.

The statistics still were frightening. Ninety-five percent of those diagnosed with neuroblastoma {at that time, with the same characteristics, would} die within the first five years. Of those who survive, some will relapse as late as seven years or develop other cancers such as leukemia or sarcoma.

But Erik�s cancer did not return.

Eventually, the family moved to Colorado and the regular check-ups were no longer necessary.

�Usually, once you get past those first couple of years, you don�t assume that it�s going to come back,� Erik said.

A second struggle

Erik�s father, Paul, eventually retired from the U.S. Air Force and the family relocated to Park Rapids.

Erik grew up and decided to attend college at North Dakota State University.

Toward the end of his second year in 2005, Erik went home to Park Rapids in May to surprise his, mother, Donna, for Mother�s Day. She immediately saw that he was pale, and he was complaining of hip and knee pain.

He returned to Fargo to finish a project. He didn�t make it to his finals.

The diagnosis on May 12 was startling: the neuroblastoma had returned.

Erik said it was so rare to have it return after so long that he didn�t even really consider it an option. Perhaps chronic fatigue. Maybe leukemia due to bone marrow transplant.

But not neuroblastoma.

�It was pretty shocking,� Erik said. �I didn�t feel anything the whole ride home.�

Erik, who had just gotten engaged and set a November wedding date, was now facing an uncertain future.

He endured more chemo, taking his final exams between doses. He took more drugs. No result.

While researching possible next steps, Donna found Dr. Michael R. Verneris at the University of Minnesota who was preparing for a revolutionary procedure.

Verneris, assistant professor of pediatric hematology/oncology and blood and marrow transplant, and his colleague Susanta Hui, a therapeutic radiation professor, were about to try total marrow irradiation. Using TMI, the bone marrow was removed from the body and high doses of radiation were focused on every bone in Ludwinski�s body before the bone marrow was replaced.

It was thought that if you could specifically target the bones and avoid organs such as the heart, you could utilize much higher doses of radiation.

Erik and his fianc�e decided to get married and have a honeymoon. They went to St. Lucia, got married and spent one week celebrating.

The day after they returned, he went in to the University of Minnesota Medical Center for the procedure.

Erik was the first TMI patient worldwide.

�It was a pretty bold experiment,� Verneris said. �It could have made it so the bones were not so hospitable for the bone marrow cells to go back into.�

The idea of TMI was that the bones would sustain 100 percent of the radiation while his other organs could be spared.

�Erik really was a guinea pig,� Verneris said. �We possibly could have destroyed his ability to make blood cells ever again.�

Erik then underwent another seven rounds of chemo.

And the cancer was cleared from his body yet again.

A third battle

But the celebration was short-lived.

During a one-year follow-up in November 2006, the tests revealed tumor re-growth.

A third bone marrow transplant was not recommended due to increased risk for toxic death.

Erik said the first transplant was risky and the second one riskier, a �huge decision,� and is not now contemplating a third.

He faced again the regiment he now knows so well: more chemo.

Again, his body responded and the cancer began to shrink.

�I must have a rare form of neuroblastoma, one with fast-growing cells,� he said. �My (neuroblastoma) responds well to chemo, which targets fast-growing cells.�

But, then he made a jaw-dropping decision: No more. He told his doctor that he was done with treatment.

�I was going through the worst period of my life in 2006,� he said. �The cancer. A divorce. I was really super depressed.�

He connected with a group of people that believed in a healing ministry, that if one prayed hard enough and believed, he would be healed.

Erik, a devout Christian, said he bought into the healing ministry and was losing faith in the ability of medicine to save him.

For four months he did nothing.

�I said, �OK, I�m going to jump off this cliff,�� he said.

But, the pain, and the cancer, returned.

So, he underwent six more rounds of chemotherapy.

Amazingly, the cancer subsided yet again.

�That is not supposed to happen,� said Verneris, the U of M doctor.

Once neuroblastoma returns, Verneris said, he tells patients to get their affairs in order. Those who suffer from a re-occurrence typically die within 6 months, maybe one year.

But Erik not only beat the cancer a second time, but he is winning an unprecedented third battle.

�That is completely unheard of,� Verneris said. �I would love to think that something we did (through TMI) made the bone marrow a less nice place for cancer cells to live.�

Living in today

Erik has experienced two earlier periods of No Evidence of Disease, or NED in cancer speak. But both remissions were followed by relapses.

�We�re not going there for a very long time,� he said, smiling.

Instead, he�s focusing on his current goal: a Bemidji State University diploma.

�After my second relapse, I didn�t even try to make plans,� he said. �Now that I�m here, I�m just looking at the short-term. I want to do really well in college � and I want to graduate this time.

�I�ll think about careers soon. But, right now, I�m just glad to be living a semi normal life.�

He now is on a steady dose of low chemo and lots of drugs. He will be on the regiment indefinitely.

�Until we find a miracle drug or it goes away on its own, which does happen,� he said.

His experiences have resulted in some hearing loss, damage to a kidney, and Erik says he has �chemo brain� from which he has some short-term memory problems.

But, it hasn�t impacted his day-to-day life. He pointed out that he has, to date, taken nine tests at BSU this year and has earned all A�s, except for one.

�I�m taking a lot of pills, but other than that, it doesn�t impede my college experience,� he said. �I feel normal.�

Erik has spent much of his time volunteering and attending camps for kids suffering from cancer.

Erik is unique in that, as an adult, he can talk to adults and answer their questions about what their children will experience, about what the chemo will taste like. Yet, he still is able to identify with the children who are sick, because he, too, is sick.

There have been �many, many times� when Erik has thought that his time might be up, but he has chosen to just keep living.

In Montana, at a camp for {young adults} living with cancer, Erik has connected with others living in the same predicament

�We all face death,� he said. �Everyone I�ve met accepts that as a possibility, but not to the point where you let it get you down.�

At his lowest points, he said, he turns to prayer.

�If I didn�t have my faith, I don�t think I�d ever be able to believe that I�m going to get better or continue to be strong,� he said. �When I get bad news, yeah, it�s really painful, but at the same time, I have comfort.�

Friday, November 7, 2008 1:36 PM CST

UPDATE NOV 12:

Arden is FOUR today, in heaven.
To celebrate this precious little girl her parents have set up an auction on eBay and all proceeds go to CNCF.

Please visit eBay at noon today and search for "Arden Nation"--the auction goes for 6 days.

Erik was interviewed by the Minnesota Daily about the 40th Anniversary BMT Celebration and his type of transplant, and will also be interviewed by the Bemidji Pioneer Press tomorrow! His BMT doctor will also be interviewed about Erik's "revolutionary" transplant. We'll post the articles as soon as we hear!!!

THE MIRACLE CONTINUES

Can it be?

The mercy of God is so great to allow us another day...Erik feels great and looks good inside and out!

Erik's scans were unchanged since August, completely normal, negative, words we love to hear. No bone marrow biopsy done, but we're very relieved nothing showed up on the scans which would be an indication of progression.

Urine catecholamines (HVA/VMA) were 2.9 and 2.9 and even counts were outstanding--HGB over 13? Unheard of! PLTs 193 and WBC 3.9

PRAISE GOD!!!!

Thank you for praying.

Erik is going to do a little celebratory shopping. I am going to pick up meds and work out...and then take a nap.

Blessings to you dear friends!!!!

Please keep praying for all these valiant fighters...

Donna

Tuesday, October 28, 2008 7:30 AM CDT
We greatly appreciate your prayers for Erik as we approach next week's scans and visit with his doctor. His back has been hurting (oh how I hate to hear him say that). It brings instant horror to mind as he had tumor growth in his spine a year ago that was causing pain...

Please pray!

He will have PET/CT scans but no bone marrow biopsy this time. It is so difficult to get any sample that his doctor decided against it, understandably. My only concern is that is the only test showing disease last we knew...it would be so nice to get great samples showing NO NB!!!

Otherwise he is still enjoying life to the extreme. His social life is maxed out permitting very little sleep. When I started the motherly nag recently about EATING since I KNOW he has lost weight (he really hates it when I start on that) he said "Yes, mother, and are you going to tell me not to run with scissors as well?"

Poor guy! But I am so GOOD at nagging.

I have come down with a rotten cold so I appreciate prayers this will quickly pass! I am glad Erik isn't exposed to this one! I just hope his roommates and classmates all avoid the plague...

Aron turns 9 on Sunday, and he is so excited to have his first party. Fourth kid and all that...he has been a tad neglected in the party department!

Lesa started violin lessons and both Aron and Lesa enjoy the Monday co-op classes. I teach two science classes and enjoy tutoring math for a few hours afterward. The Bible Survey class has been a challenge requiring a great deal of preparation (just for future reference, I don't recommend expecting 20 8th graders to read through parts of Job with expression and compassion...try something else!!) Seriously though, it has been stretching us, keeping us on our toes, and we are learning a great deal!

Thankfully, Paul is keeping busy with computers even with the economic pinch, and Karl misses Raeanne terribly.

Blessings to you all and thank you for praying!!!!

Donna

Monday, October 20, 2008 6:14 PM CDT
HAPPY ANNIVERSARY MOM AND DAD!!!!

My parents--Lou and Larry Huyge--celebrate 49 years of marriage TODAY!!!!!

We greatly look forward to the celebration for their 50th...in January 2009! My parents, brother and family, sister and family, and all of us will be joining them for a cruise out of Galveston. My parents have been on many cruises....but for the rest of us this will be a first!!!!!!!

Many many more happy years to the most wonderful parents imaginable!!!!!!

So, life continues to be incredibly surreal. Surreal within the context of living with a deadly cancer, mind you. Erik continues to do extremely well--acing classes (Econ exam tonight), loving college life, visiting young adult cancer friends (this is life on the edge as always with Anna and Lindsey), volunteering, having an awesome retreat last weekend, and packing in a full life.

The only down side lately was Erik's cell phone. The dog "found" it for him after he lost it for 10 minutes. The temptation was a bit too great to not chomp down on it--needless to say that chomp was worth $279, retail. Ugh.

Blessings to all!

Two more weeks, and then scans...please PRAY!

Love

Donna

Saturday, October 11, 2008 11:46 AM CDT
I am getting slower and slower with updates...life has been eventful but GOOD!

However, Wednesday was a very sad day saying goodbye to Raeanne and her mom who moved back to Pennsylvania to take care of her grandmother. Just the night before their dog was hit by a car. Raeanne hopes to return next year...we all (especially Karl) look forward to that day!

Erik continues to do well at school--and has several exams upcoming. He plans to see Anna and Lindsey in the cities this coming week and then go to the Soul Craving retreat where he will be in the role of small group leader. I am so happy he is diving into a leadership role with InterVarsity!

He came home Wednesday night after Computer Science Club meeting and stayed overnight for Paul's birthday on Thursday (no classes). After a load of laundry we hit the clinic for counts, port flush, and then lunch at a German restaurant. Nice day! He hurried back to Bemidji to make it in time for volunteering at the Boys and Girls Club Thursday afternoon.

I thought his hemoglobin might be low since he was pretty tired, but his counts look GREAT. WBC 3.8, HGB 12.6, PLT 170 and ANC of 1900! His triglycerides are up again (ugh) to 227, and his BUN was high but everything else looked perfect. Pretty good for constantly on chemo!

I think being tired must have something to do with being busy every minute of every day. His social calendar is quite full, but he is doing a beautiful job balancing school work since in every class he has top notch grades. He just has to slip in enough sleep (and food) into his routine. He dropped more weight so I am expecting he'll hear more about that when we see Dr Neglia next month if he doesn't pick up a few more pounds between now and then.

We are also excited that we will be able to attend the 40th anniversary celebration and reunion for BMT at the U of MN. There is a breakfast and conference followed by a lunch and celebration on Saturday after all his tests (Nov 8).

Thanks for your prayers. Please keep praying for Anna. She did not get the news we wildly hoped for, and still needs a MAJOR miracle. They are considering new treatments now, and she is very focused on fund raising for NB research. Please see her site AnnaBanana and order a bunch of pendants!

Blessings!
Donna

Thursday, October 2, 2008 6:49 AM CDT
Happy Thursday!

What a busy, happy time. Erik is doing GREAT! He is feeling well, had a brief cold but is better now, is settled in his new environment, enjoying many activities such as football games, philosophy club, recitals (his roommates are music majors) and busy with InterVarsity events. He is looking forward to a retreat called Soul Craving. And he is doing fantastic in his studies! He earned a 97 on the first accounting exam (average was 69 for 100 in the class) and he got the highest score on the first computer programming exam (also a 97)! So I guess the "chemo brain" phenom isn't affecting him too terribly!

I hope he will update here himself when he has a minute. Otherwise we can all sign up for facebook and see for ourselves all he is up to! :)

He is planning to meet up with Anna and Lindsey in the cities soon, and we are fervently praying for RESPONSE for Anna from the new experimental MIBG therapy she received a couple months ago. Please pray with us--she had scans this week.

We were so excited to see Erik on Tuesday--the first time since he moved to Bemidji. He picked up more meds and clothes, ate dinner and did a load of wash and was off again. Much too quick! But it was sooooooooooo wonderful to see him. I think he is eating okay--I'll know for sure when he gets weighed before next scans!

We celebrated Raeanne's 17th birthday by making a fondant cake and taking lots of photos. We are all very sad this is Raeanne's last week here--she is moving back to Pennsylvania with her mom to help take care of her grandmother...sniff...

Otherwise everyone is healthy and doing well. School is going well for Lesa and Aron and I am enjoying it immensely.

Much love and many blessings to those of you who continue to pray for Erik! Next scans are first week of NOV--please keep praying this miracle continues!

Donna

Sunday, September 14, 2008 2:04 PM CDT
Tuesday Sept 16 UPDATE:

Counts look good after a month of the second course of COMBAT: HGB 12.3, WBC 2.0, PLT 115, but ANC is only 600. It was 800 a month ago. That isn't great--meaning he has been close to neutropenic a long time (very low ability to fight infections). We reduced gemfibrozil to one pill a day (it upsets his stomach) and his triglycerides are 154 (with normal under 150 so that is fine). Everything else was in the normal range or really close! So he is doing well! He just HAS to stay away from sick people!!!!!

My parents connected with their Galveston friends and everyone is safe! Their condo looks intact from aerial photo. Praying for all who suffered loss.

Blessings to all!

I hope many saw special evidences of recognition of Childhood Cancer Awareness Day yesterday! I would love to come up with an event for next year to draw more attention to this in our small resort town...stay tuned!

Lesa got contacts (very exciting news for a new teen), Paul and I survived relatively unscathed from the second Bible survey 8th grade Sunday School class, we lost Aron in church today (he went to sit in the pews and we couldn�t see him, but eventually found him!), Karl came home for the weekend after his first week of work and loves his new job (still in training phase). Lesa got us hooked on a new fun game (from father-daughter camp) you just need paper and pencils for��Pass it Pictionary� (also called Telephone Pictionary) see one set of instructions how to play here.

We use little sheets of paper�one set for each player�(say 6 players, thus six papers in each stack in this example).
Everyone numbers their stack page 1, 2, 3, etc.
Every player writes a sentence on their page 1.
Everyone passes their entire stack of papers to the left.
Now each player has a sentence to read on page 1. Each person puts page 1 at the end and draws a picture of that sentence on page 2.
Pass to the left.
Write a sentence on page 3 that corresponds to the drawing on page 2.
Pass to the left.
Repeat alternating writing a sentence and drawing until your original stack comes back to you.
NO PEEKING at the previous sentences or drawings!

This is so much fun--hilarious game!
We recommend at least 6 people to play--and even at 8 Aron participates fully and adds much humor to the game. We had several fun rounds with Raeanne and her mom Mary Jo joining us, after a day out at the Walker Ethnic Fest on Saturday.

We planned to take a washer and dryer to the new apartment today but it is raining, so it will have to wait.

Erik is very excited about the room he found to rent, now we just have to work on logistics to get him moved since we have to move him too (hmmm not sure why everyone decides to move at ONCE!)

Erik has counts, liver function, triglycerides, and port flush on Tuesday and I am anxious to see results. I hope they are all still strong and looking good. He finished three weeks of etoposide, starts his second round of Accutane and starts 6 weeks of temozolomide next week.

He is tired this weekend from a very busy week which included several late nights. Yesterday he went on a hike at Itasca State Park in the rain with intervarsity guys and had a great time. He is two weeks ahead in one of his classes, and enjoying his studies very much.

How merciful God is to us! He has truly shown me the deep meaning of rejoicing in all things...even in the midst of terrible tragedy there is something much more profound, and that is His glory.

In the allegory "Hinds Feet on High Places" the Shepherd gives Much-Afraid two very unwanted companions--Sorrow and Suffering. Naturally Much-Afraid is horrified by His choice of companions for her.

As Much-Afraid travels the difficult journey with the Shepherd, she repeatedly sacrifices her will for His and then she finally comes to the High Places. She is given her true name, Grace-and-Glory, and her companions are revealed for who they really were all along�Joy and Peace.

We read this aloud as a family in the past year or so, and I have meditated on it much since. I first read it when I was a brand new Christian. How revealing to reread with the eyes of one who has been on the journey now for more than 20 years�I do see the beauty of my companions�and as I continue to lay down my will for His, I begin to sense the concept of abundant living, and how that is distinct from circumstances. I begin to see glimpses of true joy, and everlasting peace.

Joy to you friends with much love,
Donna

PS Please pray for all the friends of my parents who live in Galveston. My parents have a condo on the Seawall but are returning from Belgium to MN tomorrow. They now spend winters in Galveston but spent more than 20 years living and working there and have many dear friends.

And please read this profound wisdom expressed by the heart of a young father who lost his 3-year old daughter to NB last spring: see Anna Dahl

Monday, September 8, 2008 8:16 AM CDT
It has been a brutal week. I have been consumed with thoughts and prayers for two families who celebrated the lives of their children on opposite ends of the country on Saturday. It just seems so wrong for 3 year olds and 7 year olds to die.

I met Arden�s beautiful mommy Amy in Chicago, after much correspondence. She is an amazing, beautiful, brilliant, passionate lady. I read all of her posts throughout Arden�s battle, and always thought of the movie �Life is Beautiful� (if you haven�t seen it, it is a MUST SEE) when reading her joyous thoughtful journal entries throughout Arden�s grueling treatment.

I wish so much the ending was different.

Trying to operate in this fog has been hard. Things are so good here, but the steady losses of small children to cancer weigh on me. How do the good doctors and nurses do this, day in and day out, year after year? I'll never understand how they came to care for children stricken with such an awful disease.

Erik is thrilled with his new college life. He looks wonderful and is exceedingly happy. He is working hard, determined to ace every class. He has attended every intervarsity event so far (pizza, breakfast, volleyball, frisbee, bog walk, football game, and bible study) and hopes to find a room to rent near the campus to cut down on the time driving. Of course this makes me very nervous. College kids get sick! Erik has to keep up with his medication! He has to sleep and eat! But I know he can do it.

We moved Karl to Fargo yesterday. That feels really strange. He has always been a centerpiece to our family. He is the one who instigated the reading of hundreds of books aloud as a family, including Tale of Two Cities, Les Miserables, Julius Caesar, and so many others. He loves to play games, he is our quick-witted quote person, can imitate anyone, and is a skillful mooch. He is a lot of fun to have around, and we miss him already!

It also seems strange to move him into a nice apartment at just 19--the age most kids are starving college students-- knowing he won�t starve! He and his best buddy Seth make handsome salaries at their new jobs at Microsoft (Project Support Engineers) and with free soft drinks available at work, what�s to worry about? They found an apartment that is walking distance (across a parking lot!) to work. Two bedrooms, two full baths, two-car garage, with washer and dryer in the apt. First bedroom Karl has ever had to himself! The new building on the main Microsoft campus will be finished next year, so they will likely look for something new by then. Seth is looking for houses now, and Karl will want something more appropriate for a potential future family after Raeanne moves back from Pennsylvania late next year!

Aron and Lesa are excited about rearranging rooms here and Paul is excited about getting the legos out of the living room!

And school started. Ugh. All this back to school stuff gets me. Summer is so much more fun, who are we kidding? I object to school in Sept. It is still nice out. Can�t we start in Nov? I have a chemistry class to teach, a physical science class, and in the spring an intro to Shakespeare (from a Christian perspective). In a moment of insanity I agreed to teach a bible survey this year to 8th graders for Sunday school. I think I need my head examined. My ACT prep class is coming up soon. Youth group starts this week, and I have senior girls in my small group (which I love) and a busy year is planned for them.

Construction continues on our house, two new windows, new siding, overhang built, and various other things. The cause of the leak in the living room has not been discovered, and the sheet rock still needs to be patched. Paul is very busy with computers to fix, and wants to finish the shingles on Erik�s little bunk house soon. Even if Erik moves to Bemidji for school, it will be nice for when Karl and Erik come home for visits.

Sooooo, life marches on. Except for some, it comes to a screeching halt. I sure wish I could do something to stem the tide of children dying from cancer.

Let�s keep praying,

Donna

Monday, September 1, 2008 5:45 PM CDT
We grieve today with two families that said good-bye to their precious children this weekend, three-year old Princess Arden who spent more than a month on a ventilator after her second transplant, and seven-year old Warrior Max who fought long and hard.

Please pray for these beautiful families.

With a very heavy heart,
Donna

Wednesday, August 27, 2008 9:18 AM CDT
We are having a very exciting week. Erik stayed at BSU to play flag football with the Intervarsity guys until late after his 9 pm class ended, and got home well past midnight, after leaving home at 7:30 am! The hour-long drive each way will be tough if he maintains much of a social life on top of all the studies. He likes all his classes, and talked to each professor and explained what he is going through and mentioned reevaluation in Nov when he'll have to miss two classes. All were gracious and compassionate.

The trick for him will be remembering to EAT. He went almost all day without eating on Monday, making Momma very unhappy. His stomach is giving him problems.

Yesterday he slept in while Karl, Lesa, Aron, Raeanne, and I went to Fargo for Karl's interview with Microsoft and to do some birthday shopping for Lesa who is THIRTEEN TODAY!!!!

Karl was offered the job a few hours after the interview! He is excited but Lesa is SO SAD--she loves her brother and does not want him 90 miles away! Even though he'll come home every weekend Lesa was not consoled. What a blessing to have children who genuinely love each other!!!!

Happy Birthday to our PRINCESS!!!!!!

Please keep praying for Arden who needs healing now. She is in dire condition.

LOVE
Donna

Monday, August 25, 2008 8:35 AM CDT
Today is the Big Day!

Erik was home after 11 pm last night after two meetings at BSU (Bemidji State University) last night, and had a great time with several area students going to BSU as well.

He was up at 6 am and packed up and ready to go at 7:30 am.

He is so excited! Today is a very long day, one-hour drive there, classes start at 9 am and end at 9 pm (one evening class) so he won't be home until after 10 pm. He only has classes M-W-F and Wednesday and Friday are much shorter--should be home around 3 pm or so. He finally got in the online class he needed (statistics) so he did not have to drive all five days.

Since he qualifies for medical disability, he was eligible for vocational rehab's program to help disabled individuals get training to get off disability eventually. BSU's Computer Information Systems program is one of their approved programs. After state and federal financial aid, they are paying for the rest of the books, tuition, and fees, and reimbursing him for some travel. What a deal! He is signed up for 16 credits, and is very determined to get excellent grades. Let's pray he can finish the semester because the fine print states he has to pay back everything if he has to quit for ANY reason.

We appreciate prayers for his stamina, and concentration with ongoing "chemo brain" likely to affect him somewhat!

PLEASE step up and cry out in prayer with us for MAX who has relentless progression and pain from NB and ARDEN who is showing signs of multi-organ failure and has been on a respirator for over a month...

Much love
Donna

Thursday, August 14, 2008 1:52 PM CDT
MON NIGHT UPDATE*

--YES, we have good news on marrow biopsy--under ONE PERCENT suspicious cells--we'll call that improved from last biopsy in May which had 3 percent!!!

HVA and VMA at an all time low at 2.4 and 2.0!!!!!!!!

Hallelujah!!!!!

*FRI NIGHT UPDATE

YEEEEESSSSSSSSSSS!!

Scans look perfect!! CLEAN!!!!
Monday we'll hear how the bone marrow biopsy looks, and HVA/VMA.

Keep praying dear friends, God hears and shows us His mercy!!!!

***************

Greetings from the posh environment of the Hope Lodge in Minneapolis. What a difference from across the street! We are thankful! Ah.

Erik had PET/CT yesterday and it was a little more exciting than usual. I haven't counted the number of scans he has done here yet but over the past three years it has been QUITE a few. PET/CT every 2-3 months, lots of MIBGs, bone scans, and a few ultrasounds, MRIs, and a couple other imaging modalities that don't come to mind just now.

I asked the tech if I could go back and snap a photo of Erik in the "machine" since I have never seen it and have always wondered what it looks like and what all is involved in the process. The tech was very nice and said sure. This was his third day of being paid (he just completed his internship and hasn't passed his certification test yet).

He took us back and put the IV in for the nuclear med injection (FDG or glucose with radioactive isotope 18-Fluorine attached). It was very interesting. The nuc pharmacy prepares a dose of it and delivers it to nuc med imaging area every hour. Since FDG has a half-life of 110 minutes, the remaining radioactivity is measured after injection so they know what dose of radioactive 18-F is cruising through Erik's veins. Then Erik goes into a dark room for 1.5 hours to sit and try not think (makes the brain too bright). He also gets to drink the contrast for the CT. He thinks it was berry flavored. Berry-barium. Berry-yum. Isn't Erik so clever!?

I went back to the waiting room since I didn't want to sit in the dark room with him--too boring when I could be watching replays of Olympic highlights. Besides the supervisor was a little unhappy that I was there to begin with and escorted me to the waiting room all the while defending their "policies" and so on.

After the 90 minutes another tech came to find me and took me back to the room with the combination PET/CT machine. (The supervisor was gone by this time and the second tech was mildly curious what the supervisor had to say to me as I was escorted away).

Erik is laid out on the table with his arms over his head and obviously has to stay very still for at least an hour. The only discomfort he feels is that his arms go numb, and this is very hard to not think about for an hour.

The first thing they do is inject 125 mls of iodine contrast into his IV at very high pressure using a pump--it is impossible to manually push that volume as fast as it must be injected. They immediately start the CT and this contrast enables his veins to be visualized. I am instructed to go outside the door during the CT.

At this point Erik (still can't move and isn't even supposed to talk) alerts the tech that something is leaking and he is feeling something dripping down his arm. The pressurized contrast blew the IV back out, and blood and IV fluid was leaking down his arm and behind his pillow.

The CT must finish, so after it is done the tech came back (I was allowed back in) and he carefully cleans up as much blood and fluid as he can without moving Erik. The puddle under the pillow must stay until after the PET and last CT is done.

For about a half-hour the PET records the radioactive areas given off by the FDG taken up in his tissues. The table occasionally moves as he travels through the tube. This proves to be pretty boring to watch. Erik is still trying to not think about the fact his arms are completely numb and there is a puddle under his pillow. He is wondering if it will reach his shirt.

Then I have to step out during the last CT where he has to hold his breath occasionally. He finishes, and is relieved to find out his shirt was not stained when he gets up.

About three hours after our arrival Erik is all finished and we can leave.

Fun times.

This morning he had his 26th bone marrow biopsy and his wonderful doctor did really great as usual. No pain at all for Erik. His blood pressure did NOT drop for the first time, so no extra fluids needed. He is up and out after only 3 hours--a record.

The left side went great and hopefully his doctor got an adequate sample from the right side--Erik's characteristically hard bones bent the needle and they could not get the sample of bone OUT of the "sleeve" of the tubular needle. So instead of preparing the sample for pathology right there as usual--they sent it in the bent needle to the lab for them to try to get it out.

I am tempted to stay sometime and see for myself how hard it is for Erik's phenomenal doctor to get a bone marrow sample from Erik's back side...the descriptions the nurse gives each time is pretty extreme--profuse sweating, pushing Erik from both sides so the bed doesn't move, other expressions of disbelief of his cast iron bones...

Now we just wait for news. We'll know tomorrow how the scans look (and praying they turned out okay and don't have to be repeated) and on Monday we'll know the bone marrow biopsy results.

Thanks for praying!!!!

Tuesday, August 12, 2008 7:59 AM CDT
Off to the cities!

We'll leave in a couple hours for the U of MN. We will stay in the Hope Lodge again--which is sooooo much nicer than the ratty (the whole place smells like smoke) hotel we stayed in so many times!

Erik got home very tired from Chicago last night, and had a wonderful time with lovely Anna and her family, and his traveling buddy Lindsey. I feel bad dragging him back in the car this morning. The nephew of a friend needs a ride to the cities (his parents are missionaries in the Philippines) so we will taking him with us and dropping him off at his relative's house north of the cities.

Please pray for Erik! Scans tomorrow, bone marrow biopsy Thursday, and visit with Dr. Neglia on Friday for results.

Hopefully Paul will be able to make more progress on the little bunkhouse for Erik but it looks like rain... Karl has been working long days doing masonry but just got the day off for rain. Lesa and Aron are enjoying summer--we picked wild raspberries and blueberries (best year ever)!! I sorely miss taking Aron swimming at the lake when I am gone--my very favorite activity of the summer!

Please keep praying for Arden--she is doing better, praise God! And please keep praying for Anna--she is due for a great miracle in disease reduction after 6 years of treatment for NB and steady progression the last two years...

Blessings to you and thank you so much for your prayers,
Donna

Tuesday, August 5, 2008 8:52 AM CDT
Update from MOM:

Erik is doing great and looking wonderful. He went running yesterday and even ran further than the day before! (See his most recent post in journal history). Had physical yesterday for pre-op (bone marrow biopsy next week, as well as PET/CT scans).

His counts are really nice--PLTS 220!

HGB is best it has been in three years--12.5 after dipping to 9.2 on 3 weeks of oral etoposide in May and early June, and WBC is 3.6. Weight is 160 and I am happy he hasn't lost much this summer (only 5 lbs) since he usually loses weight in hot weather anyway.

His trigs did come down from the gemfibrozil--down to 182 from 470. But the other numbers did not improve--total cholesterol, LDL and HDL are all worse.

So we'll discuss that with Dr next week, but otherwise Erik is doing wonderful! He is going to get his books for BSU this week and take a trip to Chicago this weekend to visit Anna. Please pray for her recovery from the new experimental concentrated version of MIBG. We are begging God for a miracle for her. We are praising God for a long overdue bit of good news for Mary Catherine Virnig (a college age young lady in MN) who recently had progression of her NB.

Please pray for the Krize family who recently lost their precious Katie--she fought NB bravely for over half her life and died at 14.

Last week Erik went to a meeting in the cities to discuss a satellite of Camp Mak-a-dream in Minnesota.

We sure appreciate your prayers for next week. We are all hoping and praying for very clean scans and clean marrows!

Blessings to you all and thank you for your prayers!
Donna

Friday, August 1, 2008 9:35 PM CDT
Hey everybody! Time for me to update. Mom's at a home-school camping trip and without internet for the entire weekend... I should probably call to see if she's ok. She couldn't leave without the coffee maker though. ;)

Today, I was supposed to get a lipid profile along with my blood counts at the clinic... but that pill I'm taking to lower my triglycerides (gemfibrozil) messes up my stomach if I don't eat something a half hour afterwards and I caved. At least my port still flushed fine.

The real reason I need to update though is that I have a major announcement. On June 6th, I updated our progress on the "Time to Fly" fundraiser on caringbridge, and mentioned that it's my goal to run it next year (the 5k, not the 10k!). I wasn't kidding about how out of shape I was earlier this year... struggling just to jog a couple hundred feet. It's the hardest work I've ever done in my life. But I'm determined. Ladies and gentlemen, the first milestone has been reached...

I jogged a whole mile.

Actually for the second time. The last time I went running, my dad came with me and I think his support was a huge factor in my success. I didn't know if I could do it again... but I did. I'm improving at an accelerating pace and feeling better than ever. There's probably no way to convey just how important this is for me. To set goals and meet them... to have no control over the cancer, but able to make myself stronger... to finally feel some progress in my life. It's an incredibly emotional journey, and one so satisfying. Boston marathon, here I come!
~Erik

Thursday, July 24, 2008 8:14 AM CDT
Good morning!

I am so sorry for the lack of updates. We have been zipping along from one thing to the next without much time to regroup and report.

After Erik�s last counts and high triglycerides, the local internist put him on gemfibrozil (a fibrate to lower triglycerides). He is finishing his third course of cis-retinoic acid (fondly referred to as Accutane) since starting the four-drug COMBAT combo in May. It is definitely affecting his mood (lowers serotonin), his skin is a mess, and we just plain hate Accutane. I spoke with Dr Reynolds (Dr Accutane) at the NB conference and he suggested taking him off, as did the Czech doctor who developed the regimen (Dr Sterba). There is a debate about whether it is appropriate to use Accutane with chemo (synergistic or antagonistic?) Nevertheless, Dr Sterba has had some good results in relapsed NB over long periods of time, so who knows. Erik is adamant about following Dr Neglia�s instructions, and is finishing the course regardless. We�ll see him after scans and biopsies Aug 12-15 and talk. I would like to see Erik lined up for something like a vaccine if he gets good results from his tests next month and am looking into eligibility now.

The NB conference in Chicago was absolutely amazing. No way I can put it into words! I love reading what others write about it because it does help me try to describe it all. The information the NB doctors presented is over-the-top because there are some hopeful and promising immunological approaches (antibodies and vaccines) in development that may soon be available to kids (although I am so frustrated when the eligibility for age eliminates Erik, such as the new antibody trial at St Jude�s, which is for those 21 and under). A few other "inhibitors" of NB cell functions also look promising, as well as combinations of known active agents. So it is definitely an exciting time filled with hope, especially for the kids newly diagnosed and those who unfortunately will walk this road in the future. I was especially impressed with the panel discussions on transplant and relapse treatments.

Meeting with the families is equally astounding--so many I have prayed for and become so personally invested in their ups and downs--I actually got to meet members of these amazing and beautiful families! They aren't just virtual friends any more!

Two in particular impacted me very deeply--Paul and Amy both left their 3 year olds in transplant to come to the conference--a difficult time to say the least. BOTH children landed in ICU after the conference�little Andrew in CA has VOD symptoms and little Arden (password is sweetpea) in PA is on a respirator with a very serious lung condition called ARDS. Please please pray for these precious children and their exhausted and worried parents!

Another powerful story comes from a young man named Alperen who traveled all the way from Turkey (Istanbul) for the conference! His niece Nevin was diagnosed at 18 months and is now 3, the doctors there told Alperen's sister the little girl would not live. Alperen just finished medical school (he will specialize in surgery) and he brought Nevin's scans and medical records and was able to have very encouraging discussions with at least two doctors about Nevin's case, and each gave him very encouraging news that with surgery she is curable!

There are SO many other stories and wonderful people, I wish I could list each one for you to add to your prayers. There were 120 adults and lots of children and families who have lost their children who had the option to participate in a special session for �Angel parents� as well, and a dozen doctors who specialize in NB present at the conference. What an incredible opportunity for all of us!

As if all of that wasn�t enough, Erik spent most of the time in Chicago with Anna and her magnificent family, and we were incredibly blessed to stay with the O�Connors on Sunday and left for home on Monday. Anna and Erik are only a month apart in age (23) and both are the oldest with three siblings (G-G-B-G for the O'Connors and B-B-G-B for the Ludwinskis!), and both have NB of course. We went to church with them and then they took us sailing which Erik and I had never done before! We had such a good time playing games and just talking. They also had a young man from Ireland staying with them who is doing a summer ministry with youth, he was so much fun to meet! It is so difficult to express how much it means to have friends who have such similar circumstances to relate to�they all were a huge encouragement to us, and I am praying round the clock for Anna. She left Monday morning to get a pic line and then went to Philadelphia to be the second person to receive a new concentrated version of MIBG radiation therapy next week. She already tried the �old� MIBG in the past. Her disease has steadily progressed for the past year or more, and we pray fervently for a miraculous and complete response to this treatment. Please also pray for protection of her organs from the radiation.

Please also pray for the Daily family who recently lost 26 year old Joe, and the Kashinos, who just lost 6 year old Janie, and the Krize family, who are caring for 14 year old Katie now on hospice. Please also remember the Tran family...here is a heart-wrenching photo essay of the life and death of precious Lucas Tran.

We always carry these precious ones in our hearts.

So now Erik is getting ready for college classes, working with Paul on his �bunk house� (photos to come soon!) and is still exercising.

I am so proud of how he is handling everything right now.

Yesterday we celebrated Karl's 19th birthday with all of our family, and Raeanne and her mom!

Thank you so much for your prayers!

Many blessings,
Donna

Monday, July 7, 2008 10:14 AM CDT
*

Tues addendum: COUNTS
WBC 4.2
HGB 10.9 (up from 9.2)
PLT 193 (!!! he could almost DONATE platelets with those numbers! Ha!)

Bad news: triglycerides 470 (up from 226 two weeks ago, supposed to be under 150)

We'll hear more on this today

*

Happy July!

We had a great time in the Twin Cities visiting with Paul's sisters (Cathy from NYC and Joan from Albuquerque, with husbands too) and were thrilled to watch our nephew Max's hockey team win the Boys Open against teams from Michigan, Wisconsin, and North Dakota! Max is a very good goalie--only a couple pucks got past him!

Erik is doing good--tired, but gearing up for the big college adventure. He get counts done today, and he is still running and exercising almost everyday.

Scans and biopsies are scheduled for second week in August.

We are looking forward to the NB conference next week!

That's all the news from Ludwinski Land!

Please pray for Janie
www.caringbridge.org/visit/janie

Many blessings,
Donna

Thursday, July 3, 2008 9:16 PM CDT
This was just posted by a brave NB mom on another site ...and I am sure you can imagine how reading this made me feel...!

"I would like share with you all the reason for us deciding to continue with further treatment when we first decided not to. Back in March, as we sat with Jordyn on another long day in the hospital at the UofM, we had a visitor. We had never met him before, but when he walked into the room, he brought a huge cloud of hope with him. I don't know if he knows how powerful his presence was, as he strolled in and sat down. He is a person who has faced many many challenges, someone who is old enough to be mad and angry about it all, but still had one of the most beautiful smiles I've ever seen, probably in my top ten, ha ha. I have thought about that visit a lot, yes I'm getting to his name. He made me realize that as long as there are options out there, try them, or at least think about them. And that you really can go have fun, and help other kids or adults because of what you have been through. He made it all seem ok. So today, I would like to thank you, Erik Ludwinski, for visiting us. For being strong and sharing your strength. For caring enough about a little girl that you don't know, to come and see her. You are amazing."

Please pray for little Jordyn, who has active neuroblastoma remaining after her transplant, and had an unsuccessful surgery attempt to remove the tumor growing in her little body.

She is SO cute, and I am so glad Erik got to meet this little princess and say hi to her Mom, knowing full well that things are tough during transplant and you never know if it is a bad time for a spontaneous visit! (He was so nervous about bothering them!)

Thanks Jodie for your kind words!

Please visit her site

www.caringbridge.org/visit/jordynolsen
She turns 2 years old on July 14th!

Many blessings,
Donna

Monday, June 30, 2008 9:29 AM CDT
YES!

Sorry for the slow report. Boy we got back pretty TIRED last night, and Erik is still sleeping!!!

He made it back from Camp Mak-a-Dream (Montana) at 4 am Friday morning. We dragged him back into the car after a few hours of sleep and drove four hours through a horrific storm, complete with tornado watches/warnings and incredible downpours all the way to the cities. My sister Dawn, her husband Richard, their son Sean, and my Mom Lou all rode down earlier and met us at the hotel.

We checked in the hotel and then had dinner with Paul's sister Joan and 11-year old nephew Max--who we haven't seen in 10 years! They flew in from New Mexico for hockey training in Iowa and will go back to the cities for a tournament next weekend--so we are going back to see them and Paul's sister Cathy and her husband Mike (from NY), and Joan's husband Mark will be joining us also.

The kids rode on rides at Mall of America and we went to bed too late.

We woke up early for our big day.

The whole day was fun! Complete with a comedy of errors. A planned "implosion" of a building downtown in the area required rerouting traffic to downtown St Paul, incredibly slow and we were on the verge of missing the whole thing�we were so late. It was POURING rain. They parked us in the wrong area (there was reserved parking for the race and ped onc/BMT families, so we had to hike a significant distance to the race. We got checked in, got our numbers and shirts and stood by the 10K race announcements (race announcements and fund raising awards were to be announced at 9:15 and our 5K was supposed to begin at 9:30). Well we stood there waiting to hear the fundraising announcements and 9:30 came and went.

THEN we found out we were supposed to be in ANOTHER area (they were doing the two announcement simultaneously but in different places!) So we found where we were supposed to go, and everyone was GONE! So we all did the course with some running and a lot of walking, and it started POURING again right as we finished. Erik was SO tired from getting in driving all night from Montana AND pushing himself hard at the camp with minimal sleep the whole week, so he was exhausted�needless to say he walked the whole way! I was just glad he was still upright and we didn�t have to carry him!!!

Anyway we found one of the organizers after crossing the finish line and asked her about the fundraising announcements, and she said that Alyssa Shultis who actually came in first wanted to give recognition to ERIK but he wasn�t there! And we looked for Alyssa afterward to congratulate her and thank her for thinking of Erik, but she was gone. She graciously wanted to share the award with Erik for top fundraiser! See AWARD (scroll down to bottom, left hand side--"Beth Shultis Memorial Award")

Afterward there was a picnic for BMT and ped onc families so we had a nice time (it was inside a building�good thing because it poured on and off). They had fun activities for Aron and cousin Sean. We got to visit a bit with his NP Jody who walks on water as far as we are concerned-- We love her so much!

We went back the hotel to rest a bit, then ate at a great Italian place afterward (Cossetta's! I found it easy this time Pam!!) and went to the science museum�and saw the Star Wars exhibit, Special Effects IMAX movie, and the museum was open until 11:30 sat night! So we were ALL pretty wiped out Sun morning! We went to the zoo on Sunday and drove home last night with a tired crew.

So the grandest report is the feeling of being so loved and generously supported by such a crowd of loving, caring, selfless people who love Erik!!!! What a joyful feeling!!!!

THANK YOU ALL!!!!!

Photos coming later today!!!!!

Blessings to you!
Donna

PS PLEASE PRAY for Joe Daily's family--we just learned the tragic news that he lost his 18 year battle with NB yesterday. He was 26, relapsed four times, was home coming king, went to college, and beat out hundreds of applicants for a teaching job...what a great man who will be terribly missed.

Wednesday, June 18, 2008 9:12 AM CDT
Well I think summer has officially arrived to northern Minnesota. We took Aron swimming yesterday finally and Lesa and I soaked in the sunshine while she read to me.

Afterward Aron helped me plant flowers (also finally). The garden is a lost cause this year, so I planted one tomato plant in a pot!

Erik leaves today for his trip to Montana for Camp Mak-a-Dream's young adult cancer patient camp. Shall I confess how nervous I am that he and his friends are driving through the night tonight 1032 miles? I appreciate prayers for their safety and good sense to stop and sleep if they need to!

And we are VERY excited about YOUR generous response to Erik's fund raising effort for the Time to Fly race! Erik is one of the highest ranked fund raiser among all the individuals and teams! Whoo-hoo!!!! Let's keep him up there!!!

He is hoping to get closer to his goal in the last week before the race!

He designed some cool shirts for us to wear, and we need to get a sign made for our team. he is still running and walking and exercising, but made more challenging with a dropping hemoglobin--now at 9. I am praying it doesn't drop anymore--the high altitude in Montana will be difficult enough.

And please pray for Joe Daily--a 26 year old man who has fought NB on and off since he was 9 years old--he was diagnosed the first time just 6 months before Erik in 1991. He is paralyzed from growing tumor in his spine, bleeding from his bladder, suffered terribly from bed sores, and cannot have any more chemo. Please pray for him and his dear mother Nancy.

And a little 3 year old girl Arden is undergoing her second transplant right now and is so miserable--when she should be outside playing in the sunshine like a happy three year old...

Blessings,
Donna

Wednesday, June 11, 2008 10:43 PM CDT
What an incredible weekend!

We left late on Friday for southern Minnesota for Nathan's graduation party with high winds and rain (and even tornadoes within 10 miles of our house!) and when we got there it was sunny and nice! We had a great time catching up with a couple other Camp Sunshine families and spent the night in a ritzy suite provided by the generous Walz family! Erik and Harlan boys and Walz gang stayed up LATE playing Rock Band.

We enjoyed time at the MOA (Mall of America) with Alyssa Harlan and kids after Karl was dropped at the airport, and then headed over to hotel. Erik hung out with the Camp Mak-a-dream friends (also very late) and found out the next morning the Fox news canceled the interview--but he was so tired he was happy about the extra sleep.

The lemonade stand fundraiser at the Mall was the most amazing production! There were 80 competitive dancers and their families, and they were there from 11 am to 4 pm --they put on two shows that were absolutely incredible! I was so happy to meet some NB families I have known of for a long time--Carl's mom Kelly, Daniel's dad Vic, Kate's mom Karen, Adam's mom Lynette and dad Alan, and was thrilled to see Peter again and his mom Erika and dad Ty!

After about 7 hours at the mall we left to drive 3 hours north to the cabin "Tiffany's Retreat" (near Pine River for families with kids with cancer) that the Walz family was staying in for the week. It was SO beautiful and so much fun it wasn't hard to twist my arm to stay another night! I loved every minute talking to Pam--I think of her as my therapist! We played a lively game of Trivial Pursuit (boys against girls) until 2 AM the first night!!! The kids fished, rode paddle boat, played Rock Band, ping pong, and numerous card and board games. We had SO much fun the kids were broken hearted to leave even though Erik was VERY wiped out by this point in time (too little sleep too many nights).

In fact he looked so pale and was so exhausted yesterday I took him in today to get counts (not due until next week) because I was pretty sure he might need a red cell transfusion. Good news, his hemoglobin was 9.7, really not that bad (normal is 14-18) and transfusions are done at 8 or lower. He also has mouth sores and low ANC (500) so I think he needs to lay low for a few days! Platelets are great, 105!

He just finished three weeks of etoposide and this week is easy in the drug dept (celebrex only) so I am hoping he can rest up and feel good by next week when he is due to leave for Camp Mak-a-Dream (and start accutane again, then add in temozolomide the next week).

All in all we had the most fun in four days I think is possible. It was a complete blast.

Soooooooo, now we are excited about getting Erik rested up and running again so he can be ready for our BIG DAY June 28! My mom, sister, brother-in-law and nephew joined our team so we will have a big day as a family together.

THANK YOU FOR SUPPORTING ERIK!!!! This means the world to Erik and to all of us!!!!!!!

Blessings to you!
Donna

Friday, June 6, 2008 12:58 PM CDT
*

UPDATE---Just jumped up to over $1000 thanks to a VERY generous donation from Tim Haegelin!!!!!! Tim if you are reading this THANK YOU!!!!!! I wonder if you can imagine how much this means to us!!!!!!!!!

MORE NEWS: Molly Hollway and Erik will interviewed on FOX 9 Sunday morning at 9 AM live from the Mall of America in Minneapolis!!!

We are headed out to congratulate NATHAN WALZ on the occasion of his graduation from HIGH SCHOOL while enduring two years of treatment for non-Hodgkins lymphoma!!!! Karl is flying out tomorrow to PA to meet Raeanne's family, and we get to see the Hollway's and other NB families at the Mall of America for another ped cancer research fundraiser!!!

*********

Wow... I am shocked! Just a little under a week since we posted our "Time to Fly" fundraiser, and we already have $720! You guys are amazing--thank you so much!!!

My mom keeps congratulating me on all my 'hard work' on this fundraiser, but there isn't much work to getting signed up for the 5K walk/run, setting up the fundraising page... While I felt guilty about not doing more for our team, I can assure you I haven't been lazy!

We chose the 5K walk/run because the whole family could participate in it, but also because my stamina is not quite ready for a 10K run. The chemotherapy took a huge toll on my muscles and cardiovascular ability... by the time I could get out and exercise, I got winded running 100ft.

I'm determined to change that, however, and have been getting out every day (as weather allows!) to walk/run the 4 miles around our block. It's been incredibly difficult, but I can see improvement already. Next year I'll try the 10K race in Minneapolis, and my long-term goal is to run a marathon like my Dad and Pastor did for Dana Farber in Boston! Knowing I have a massive source of support will fuel my every step!!!

I will also be making custom shirts for our team to wear on our walk, so look for pictures of us after June 20th!
~Erik

Wednesday, June 4, 2008 6:46 AM CDT
Last night around the dinner table I was happily reporting up-to-the-minute progress on fundraising for Time to Fly race (up to $700!), and expressing how incredible it was that people are so generous to give to this cause for Erik. I reminded the younger ones (Lesa, 12 and Aron, 8):

"Since you are on the team, don't forget you should ask all your friends to give you money to support you in this race too."

Aron paused a moment with a worried look on his face and said, "That's kinda rude."

We all burst into laughter! It hit all of us somewhat simultaneously how right he is...

I thought about it all last night. We have become beggars for charity! I thought how much better it would be if we all took on an EXTRA job of some sort, worked to raise our goal, and then gave the money to the cause so dear to our hearts.

Wouldn't that feel grand?

So, now we are scheming for the next event...!

But until we come up with a better solution for next time, please help us spread the news about Erik's desire to GIVE BACK and provide desperately needed funds for pediatric cancer research, since this literally means LIFE to him!

THANK YOU SO MUCH!!!!!!

Blessings!
Donna

Please see Monday (June 2) journal entry for more on WHY Erik is doing this--how he has DIRECTLY benefited from pediatric cancer research!!!!!

(and rain or no rain, he is running today!)

Monday, June 2, 2008 8:38 AM CDT
Inconceivable!

Surely you remember the over-use of this word by Vincini in �Princess Bride�? I love Montoya�s line (with Spanish accent): �You keep using that word. I do not think it means what you think it means."

Within moments of posting Erik's news of running to raise funds for pediatric cancer research at the U of Minnesota, he already had a very generous donation! Thank you Joan (Paul's sister) and Mark and Max! Then Michelle and Berta donated, and Lisa (from Australia!), and Jeff (our pastor from Boston who ran a marathon for Erik in 1993) and Tina, and then Doug (generous friends of Joan!), Lynn, Rachel and Zac gave, and Peggy (Paul's cousin) and Evan, and Steve and Paula (missionaries), Cathy (Paul's sister), Mike and Marie (Cathy's friend), and Erika and Eigner family (brave Peter is NB survivor!)!....this is SO EXCITING!!! Already up to $700 in two days!!!!

It is SO hard to be succinct in describing how important this is to us. Erik has benefited from the best imaginable care at a world class institution treated by TOP NOTCH doctors even though he has a difficult cancer, no insurance (medical assistance and medicare), and is even too old to be treated by pediatric oncologists!

We live and breathe gratitude for the great gift of cutting edge medicine and research.

Not only was Erik the very first patient in the world to have true head-to-toe total marrow irradiation as part of a stem cell transplant regimen (see page 1 and page 2 for article about Erik--hit refresh if blank!), he was also enrolled in two other clinical trials, treated according to another one (too old to enroll) and was just selected as a control for further late-effects study of childhood cancer survivors. His doctors at the U of MN just presented a new study on heart effects at last week's ASCO meeting.

See, I could go on and on. Erik is so excited to feel like he is DOING something to give back for all he has received. You are the ones making that possible!!!!

It is very humbling to see the love and inconceivable perseverance on your part in support for Erik.

Thank you all so much!!!!

And today is his first break from cis-retinoic acid (accutane) and we are fairly sure the lower dose is better so far on his skin (and mood). He was on 160 mg/m2 per day in 2006, now on 100 mg/m2/day. But since the effects can be cumulative, we�ll have to see how the next cycle goes (he gets two weeks on, two weeks off).

Blessings!
Donna

Monday, May 26, 2008 8:23 AM CDT
Life feels SO STRANGE now. I don't think I accomplished a thing last week--mostly walking in little circles trying to decide what to do.

I thought a lot about little Penelope who died a year ago (May 19), and was hard hit by the loss of Spencer last week (May 21)--he fought NB for six years, exactly half his life. PLEASE TAKE A MOMENT TO SEE AND HEAR Spencer tell you about his life.

He says �Apart from my cancer you can see that I have a fantastic life.�

Erik is doing well, but the sad effects of Accutane are all too evident. One mom aptly calls it "craputane" and trust me if you saw what high doses of this stuff does--you would too! The etoposide doesn't make him sick at all, so that is very good. He may lose more of his hair, we�ll know in a couple weeks. He has been running (with walking breaks) four miles almost every day!

He bought a new desk and set up a nice STUDY spot and is excited to get organized for school. He has very little space to work with and 2 brothers in the same room, but so far he is happy with the arrangement. We met with vocational rehab last week and got his plan for school all squared away. He just needs to pursue permission to take one online class (denied already) so he can keep the driving to three days a week (it is 60 miles each way to the university). Meanwhile he is very excited about his trip to Camp Mak-a-Dream for young adults with cancer (end of June).

My parents just arrived in MN after 5500 (corrected!) miles winding up the west coast from New Mexico (pulling their new RV), and are now all set up at my sister�s place. We are looking forward to seeing much of them this summer! In June or July they plan to take a hop to Europe to spend time in Belgium looking up genealogical records of my Dad�s ancestors. I sure would love to tag along!

Many profound thoughts swirl in my head that are difficult to express as I try to process the losses of small children and the extreme blessings we are experiencing everyday. Perhaps this is like what the veterans of wars experience because they NEVER forget their fallen comrades. I guess we all live with some degree of "survivor's guilt" whether we admit it or not.

While we are flying high with the reprieve Erik has been granted from progressing cancer, I constantly wonder why the other children cannot experience the same�please pray with me for the many who are suffering so�and pray for the good doctors and researchers who spend their lives trying to answer the same question.

Remembering the fallen, especially those who sacrificed their lives for ours,

Donna

Saturday, May 17, 2008 12:09 AM CDT
Ahhhh. Saturday!!!

It is really feeling like spring.

After cis-retinoic acid (Accutane) was denied, our awesome NP Jody straightened out insurance and got it approved in record time. All drugs in hand, and Erik is ready to start Monday.

His counts are great (PLT 107 and ANC 800) and we all expect this not to hit his counts much at all. The main thing is watching triglycerides, since he is starting out so high and cisRA can raise it. No word yet on the rest of the lipid panel.

After picking up all the drugs, I looked at the totals. (I am hopelessly quantitative in my thinking).

If you are interested you can see his drug calendar here: COMBAT (calendar)

cisRA (claratin generic for accutane) is $10 per capsule, he takes five a day for two weeks, three times in 13 weeks. Etoposide is $49 per pill, 21 days per 13 weeks. Celebrex is only $5 per pill, so $10 per day for all but two weeks in 13 weeks. Temodar is the shocker at $249 per day for 6 weeks out of every 13 weeks. The grand total is $14,500 for 13 weeks, or an average of just over $1100 per week. If he stays on it a year it will cost $58,000 in just drugs, and that doesn't include ANY clinic visits, blood tests, or scans or biopsies...or other drugs like zofran to help with nausea ($50 per pill)....

wow.

All that for a low-dose "easy" oral chemo to maximize quality of life and keep the cancer down.

Meanwhile please add Sam to your prayers--his parents just found out he progressed and he is starting a new treatment to beat back the NB.

Blessings to you,

Donna

Wednesday, May 14, 2008 7:30 AM CDT
Yesterday we heard back on the bone marrow biopsy (left side only) and unfortunately it was positive. Less than 3 percent NB. So we can't say NED yet (no evidence of disease). But we are optimistic about the new drug combo he starts on Monday. Hopefully in August we'll hear the bone marrow is clear!

The surgeon looked at the PET and thought it looked like normal post-op changes for gallbladder surgery, so we are happy.

Last on the list is to figure out if the high triglycerides (sits around 300 and should be under 150) needs to be treated, and waiting on the rest of the lipid panel. Doc may order more heart exams. My theory is that it is genetic and we can thank Paul for that! Paul has always had yucky numbers even when he went on a prolonged strict vegetarian diet (no animal products whatsoever), and all his life he has exercised like a maniac. We need to make sure Erik eats sardines everyday--he loves them! He is very into nutrition, and the trip last fall to Planet Cancer was a big boost (great presenter to encourage them about the importance of good food).

Erik has almost everything worked out for school next fall--just the little detail about money needs to be addressed. Since he is on disability (SSI and SSDI) and the program he is interested in is a "Workforce Incentive Act" program, he should get help with the cost. We'll learn more in the coming weeks as his financial aid is worked out.

So now my goal is to figure out what to do with myself. I am just exploding with ideas concerning things I have been ignoring so long. I am hoping this regimen is extremely tolerable, so I can focus on the other kids for a change! I am hoping to teach general science and chemistry lab courses next year for homeschool kids in our community--I haven't been able to do it for quite a while. The ACT prep classes need to be expanded to include information on career choices and paying for college--I have such a passion for this. The families sending their first kids off often learn the hard way, and the astronomical debt some kids graduate with is tragic.

Other than that I am working on keeping my reading on neuroblastoma and its treatment under control so we can spend plenty of time swimming at the lake this summer! (Presuming summer comes at all--all MN locals will confirm it actually snowed here last Saturday!) I am working on bits and pieces with many others on a significant project to help parents of kids newly diagnosed with NB and it is exciting to see the project coming together! I also want to put together an intro to understanding and interpreting medical statistics. Fun stuff!

I am very jealous a few NB friends are going to the Advances in Neuroblastoma Research meeting in Japan next week! This meeting occurs every two years, and I look forward to hearing about promising advances by the vast array of researchers presenting.

Blessings to you--have a beautiful day!

Donna

Friday, May 9, 2008 9:41 PM CDT
How loud can you sing????

The PET shows a very bright spot (SUV 9.3) where his gallbladder was, and the CT shows a little fluid collected in the area, but it is most definitely related to the gallbladder surgery (surgeon is looking at the scans, we�ll hear next week) and NOT malignant.

The five words on the report that got us all SO excited this morning in meeting with Erik�s doctor and NP:

�Impression: Resolution of hypermetabolic skeletal activity.�

That means NORMAL bones and bone marrow! We are still waiting on the final bone marrow biopsy report (left side only) and if clear it will confirm Erik�s status as No Evidence of Disease (NED)!

His HVA and VMA are lowest ever: 1.8 and 3.1 respectively.

So what next? Hopefully the surgeon will agree the bright spot is just healing tissue after the gallbladder removal, and Erik will have another week off, then start a four-drug combo called COMBAT to keep the disease down. COMBAT stands for �Combined oral maintenance biodifferentiating and antiangiogenic therapy.� Cool huh.

If you want to read more, see pubmed abstract.

He will be on two of the same oral drugs: temozolomide (at a lower dose but for 41 days instead of 5 days), and Celebrex (same dose), and then add in etoposide and ACCUTANE. (A collective groan is heard around the globe). But Accutane will be at a lower dose than his very depressing six-months after stem cell transplant in 2006. So we are optimistic it will go much better. He is SO happy and ambitious about his new plans for completing his degree and taking a road trip to Montana with Camp Mak-a-dream friends this summer and many other exciting things that he is not concerned at all about the new regimen.

We are all THRILLED he will be off IV chemo. This is what we have been praying for so long! He�ll still need counts (infrequently) and port flushed (he�ll keep for a while).

The oral combination is complicated with different drugs on and off for a cycle of 78 days and then a 14 day rest, and start the 78 days again: Celebrex days 1-78, etoposide days 1-21, temozolomide days 36-77, and Accutane days 1-14, 29-42, 57-70.

He�ll be scanned and biopsied in August to see if it is keeping him clean.

We are so ecstatically happy!

What incredible news to get before Mother�s Day, the wretched day three years ago he pulled a surprise visit from college and I saw his pale lips and knew he had relapsed�

Isn�t God good? Isn�t He merciful? We have been drowning in bad news lately with our NB friends. Just seems at every turn there is another with run away disease, and no hope left. Another family says good bye to their beloved child. While we continually mourn with our friends, we are simultaneously lifted to the heights of extreme joy for the good news and mercy shown to us today.

God bless you for praying for Erik. We are overwhelmed with gratitude.

Please continue to pray for Joe (no website) who is 26 and has relapsed four times since his first dx at 9, Anna, Max, Janie, Spencer and Emily

And pray for those trying to keep going without their little ones.

We met a new friend Jared from Omaha NE who has osteosarcoma (left shoulder amputation), and diagnosed a year ago at 19. He was at the Hope Lodge with his mom and grandmother to start a new trial at the U of MN, and has more lung surgery coming up to remove more lung metastases. He is a wonderful young man! We told them about Camp Mak-a-dream and are hoping very much he will be able to go!!! Please pray for him!

Love,
Donna

Thursday, May 8, 2008 8:06 PM CDT
Erik is having dinner with a couple friends he met at Camp Mak-a-Dream, and I just finished enjoying an authentic Indian Tea hosted by a group from India. The Hope Lodge is just beautiful, and several of the companies that donated money for this "home away from home" encourage employees to keep up the relationship with the house through volunteering. I am impressed they have the kind response of volunteers here too--so many people do so much for kids with cancer--the Ronald McDonald house is a couple blocks away and food and events are planned there by a constant stream of volunteers. I didn't really expect that here!

The PET/CT went fine (he felt a little icky afterward from the contrast this time) and bone marrow biopsy was uneventful. His bone is so hard it is getting very difficult to get good samples of the core (aspirate is easy enough), and his doctor said he didn't get a suitable sample from the right side. So we'll have less information from that test.

He also glanced at the scans and thought it looked about the same, but it had not been read by the radiologist (complete with SUV values which will tell us for sure if it is better/worse/same). Tomorrow hopefully we'll have a full report. We really appreciate your prayers.

Erik and I went to see Ironman this afternoon after the biopsy--I haven't been to a movie in years! It was fun.

My heart just sinks every time I learn about kids (big and small!) who relapse, progress, facing really tough circumstances. Please pray for Joe (no website) who is 26 and has relapsed four times since his first dx at 9, Anna, Max, Janie, , Spencer and Emily
And pray for those trying to keep going without their little ones.

Blessings to you all,
Donna

Wednesday, April 30, 2008 8:58 AM CDT
Erik's counts actually came up for the second week of chemo, so I am very thankful Erik's team decided to go ahead last week. His platelets are up to 161 (from 115), and ANC jumped up to 1100 (from 550 last week)!

He has been very sick this round. More nausea than ever, and yesterday he tried ativan for the first time since he hallucinated as a 7 year old in transplant. It went well, we think. He is always nervous to try new drugs for nausea because of the strange side effects that can occur. Compazine made him extremely jittery and made his brain race--it was horrible and lasted for hours. He would much rather be throwing up! He had a very scary dystonic reaction to trilafon years ago that caused his face and muscles on one side of his body to "lock up" or freeze which looked very much like a seizure! Ugh!

This cycle will complete 90 days he has spent in the clinic getting IV irinotecan since starting this combo after progressing on the hu14.18-IL2 antibody. That is in addition to five hospitalizations, eight weeks in the cities being scanned and biopsied, three trips to Madison for fenretinide trial, and more clinic visits (too many to count) for blood draws and other tests since his second relapse 18 months ago.

Yep, Erik would like to find something else to do with his time! On Monday he will visit the university in Bemidji to register for fall classes before heading to the cities for scans and biopsies. We will stay in the new Hope Lodge for the first time--sort of a grown up Ronald McDonald House! The following week Erik plans to meet with the vocational rehab counselor to see how they can help with his transition back to college (required for those on social security disability).

We sincerely covet your prayers for good news next week. As I watch so many of our little friends with relapsed or refractory NB suffer through so much harsh treatment I am so saddened by the frequent losses and completely overwhelmed at the blessing of Erik's response to treatment so far. Please pray for our friends and PLEASE pray for Erik to get good news, clean scans, to be able to move into easier oral chemo, to be able to plan and follow through with his goals, and to be outrageously blessed as he walks with God each step of the way. THANK YOU!!!!

Blessings to you!
Donna

Friday, April 25, 2008 2:23 AM CDT
*

MONDAY APRIL 28 NEWS FLASH:

It's CHERIE'S BIRTHDAY!!! She is 20 years old today, and by far one of the loveliest, smartest, most wonderful young ladies I have ever had the pleasure of meeting!

HAPPY BIRTHDAY TO CHERIE!!!! WE LOVE YOU!!!!!!

Erik needs to get counts before starting second week of chemo today. Last week he actually started chemo with a low ANC (550, supposed to be 750 to start first week, and 500 to start second week)...so we'll see what today's counts are.

Next week SCANS and BIOPSIES...PLEASE PRAY FOR GOOD NEWS!!!!!!!!!!!

Blessings,
Donna

***************

It�s been a week since we got back already. I would have written my own update sooner, but it took this long to recover and collect all my thoughts! The trip was amazing�couldn�t have gone any better. We saw everything we wanted to see and got a great workout walking all around the parks! It had to be one of the fastest weeks of my life. Almost too fast to remember everything, but that�s why we took around 700 photos! Sometimes, I felt a little embarrassed being the �tourists� going around, snapping pictures of everything I saw� but it�s really the only way to take a vacation because when it�s over, all you have left are those pictures besides the memories and a couple of over-priced souvenirs. You might find this really surprising, but I actually find vacations rather frustrating� for the same reason I get frustrated with a good book or movies that I get really into. They all have one annoying factor in common.

They all have to end.

I don�t like endings. I�m sure a lot of people feel that way, but I�m probably the only one who takes it so far as to dread coming back home before I even leave. There�s something about temporary things thing that I just can�t stand�it�s the reason I spend more time thinking about the future than living in the present. When I have a job, I think about where it�s going to take me. When I�m in a relationship, I have to know if it will last. It also reminds me of the part in Matthew 6, where it talks about storing up permanent treasures in heaven as opposed to temporary ones on earth. If I knew I was doing that, I�d probably feel a lot more satisfied. I don�t know if cancer had something to do with the way I feel, or whether that�s just part of my natural personality� but it does keep me from living wild.

There is one reason I wouldn�t have missed the trip for the world though� it made my day just watching how excited Aron was going on all the rides, seeing all the sights. It reminded me of the last time I went to Disney World. I must have had that same wide-eyed excitement too, viewing the world through a set of younger eyes. Growing up is really the worst thing that can happen to you, but that�s why kids are so important, right? They bring it all back. After going on the �Kraken� rollercoaster three times with Aron while we were at Sea World, I really started to feel like a carefree kid again.

~Erik

Monday, April 21, 2008 9:46 AM CDT
Ugh. Back to reality. While we are all glad to be home poor Erik has to face chemo. He has to remind us periodically it does NOT get easier, even though we are so used to the chemo routine. It doesn�t make us sick. Chemo starts today for two weeks, and then back to the cities for reevaluation (scans and biopsies) the first week of May. Seems like we do that a lot, doesn�t it? But the last ones were in January, and he will only complete two rounds of chemo between scans (he should have had four rounds according to the protocol for this chemo). A gallbladder surgery, pokey counts, and hospitalization for infection slowed things up. But I am praying desperately that this chemo is doing the trick and we will see clean scans. If scans are clear, it would be a good time to try an oral chemo combination to keep the disease at bay. Erik would like to return to college next fall and finish his degree�he is planning to go to Bemidji State University and register for classes next month to complete a BS in Computer Information Systems. His two years of computer engineering classes will transfer and he should be able to finish in two years or less.

Please pray for Erik!

Karl is extremely glad to see Raeanne (she stayed at our house to take care of our animals and even had dinner waiting for us when we got home!) and Karl is back to moving rocks today�see the website Erik created for Karl�s boss www.guidamasonry.com.

Paul has a backlog of computers to fix, and the rest of us have school to do and catch up with other stuff.

So how was our trip????? Well, it was truly a DREAM VACATION!!!!!

First of all, it would be prohibitively expensive for us to take four kids for a week, visiting Disney parks for five days plus a waterpark and DisneyQuest (an amazing interactive game place) and SeaWorld, eating in restaurants everyday! It was SO much fun to go and see everything and eat outrageously priced ice cream anytime on an impulse without counting pennies! It was a BLAST! Sixteen years ago Erik was 7 years old last time we were in Florida (Make-a-Wish trip), and Karl was 2.

I hate to bore anyone with too many details of the trip so please don�t feel badly about skipping the rest. I want to record it for our own memories since I don�t journal other than this website! And if anyone is trying to attempt a marathon visit with big kids, we might have a few ideas to share concerning the art of standing in line!

Our flight there was smooth and we were relieved to get out of the snow and ice in Minnesota. Even though it was a rush to leave before the storm, the extra days in Minneapolis were relaxing and fun before we left (eating out and going to Mall of America).

We stayed in a 5-bedroom rental house (www.vrbo.com) with two master suites and a pool, that is fully twice as big as our house. Erik, Karl, and Aron share a room at home, so you can imagine how much they loved the house! Most hotels will not allow six people to a room, and the house cost less than half of most hotels. I was shocked to find out after we got there that Give Kids the World was across the road RIGHT behind the house (trees and a river were between us). I wanted so much to stop by and let the kids see it, but we did not have time. We did not stay there 16 years ago because it was full, but we did visit then. It is a beautiful place.

We rented a van, and the drive to the parks was only about 20 minutes, depending on the traffic. Aron and Lesa swam in the pool the fist night and we got groceries for breakfast.

Sunday we went to Epcot. After about seven hours everyone was pretty tired, so we decided to call it a short day and go out to eat, with a plan to return to Epcot the last day since we didn�t see any of the world show case. This was my favorite park. The crowds were much smaller, the gardens are so pretty, and I enjoy the �educational� focus. I loved the history of communication ride (Spaceship Earth), and there were still quite a few things we still didn�t see even with two days there! All of us really liked the �Jamitors� who drummed on trash cans and flower pots. Erik got a great video to put on you tube. It was raining and cool, and Karl was running for cover and slipped and lost a good chunk of skin on his elbow, so he checked out the first aid station and got patched up.

Monday we went to Animal Kingdom, and we all loved this park! The Lion King show was really incredible, the lines weren�t terrible, and we mastered the �fast pass� thing. We all loved the Everest rollercoaster, watching the fruit bats, and happened to sit down in �Africa� just in time for a wonderful parade to pass by. We were there from opening to closing, and still didn�t see everything, but it was a really good day. Can�t remember where we ate dinner!

Tuesday we slept in a bit and headed for SeaWorld at 11 am. It was a really beautiful and relaxing day. We enjoyed the shows, petted dolphins and sting rays, and loved Kraken roller coaster (kids went three times) and have a great photo to post when I get everything transferred to my computer. Lines were minimal, and it was a cool, pleasant day. We went out to eat and felt rested for the next day.

Wednesday we went to Hollywood Studios (was called MGM) and the crowds were massive. First day of significant standing in line, and feeling a bit �herded� about. One man was actually mooing. A smart lady in front of me had pretzels and cheese crackers in her bag, and I took note for the next day. We discovered beef jerky is a GREAT light weight snack for standing in line as well! It became a time saver too, with all the food establishments incredibly busy at both Hollywood Studios and Magic Kingdom�more standing in line (I also carried frozen bags drinks and bottles of water to keep everyone hydrated)! The kids loved the car stunt show, and Karl amazed the people in front of us with the pre-show trivia questions all about cars in movies�he answered them all before the multiple choice popped up. The funny one was �What movie has the same name as the Japanese word for Samurai without a master?� and although Karl had never even heard of the movie he �happened� to know the Japanese word--Ronin. The expression on the face of the lady in front of us was incredulous! We need to put this boy in a game show. I really liked the Tower of Terror (spooky elevator gone awry), but poor Paul was feeling kind of sick to his stomach, so it didn�t help much. We saw the Fantasmic show at closing, and what a crowd we fought to get out of there. We were exhausted by the time we got home, about 11 pm, making it more than 12 hours at the park that day.

Thursday we went to Magic Kingdom and again the crowds were just overwhelming. Masses of humanity! Really a shock to our system, since we live 10 miles away from a town of 3000, and our closest neighbor is more than a quarter mile away. We tried to get in the top attractions, but it was hard getting around in the park to get the fast passes at the appropriate times. We loved the Pirates of the Caribbean and the Jungle Cruise�thought the �guide� was very funny. We got drenched on Splash Mountain, but it was warm and we dried fast enough. It was at this park I really noticed the 40 year technology spread in the attractions. After seeing some new and AMAZING technology (like the interactive animation in Monsters Inc Laugh Floor�real time animation talking and responding to the audience) and the 3D Mickey�s PhilharMagic we went on �It�s a Small World� ride and Aron�s comment was �They really need to update that ride.� You could certainly tell the difference by the lines! No one was waiting for the older rides like Carousel of Progress (I liked that one). Aron was scared by the Haunted House, so that was a regret. The last fast pass we got was for Space Mountain, and with �technical difficulties� the fast pass wait was about 40 minutes. Paul lost his favorite hat on the ride. The crowd was so massive we couldn�t see the SpectroMagic parade, a disappointment. We all had to hold hands leaving as the park closed, because we walked smashed shoulder to shoulder with countess thousands to leave the park. It was unbelievable.

Friday was the first really warm day (topped 80) and so we planned to get to Epcot at opening, see all we missed and eat in Japan (5-6 hours), and then go to a waterpark in the afternoon (3-4 hours), and when the waterpark closed at 6 pm, go to Downtown Disney to see the DisneyQuest and eat and shop (4 hours). Whew�way too much! Everyone but Aron slept at the waterpark (we had to take turns going around on the slides with him). I think they need lounge chairs at all the parks. It felt SO good to lie down! Again big crowds leaving at closing time, and guess where they all went�yep! Downtown Disney! When we first got there DisneyQuest was not crowded at all, so I am glad we were able to try at least a few things before eating since everyone was hungry by this point. This is a state of the art place for technology/game fiends. Here is a great example�design your own roller coaster on a computer, then go in a simulator and ride your roller coaster! It even scores how much of a thrill it is. The simulator goes upside down and rolls, etc! Lesa got to participate in a 30-minute animation class, they rode a virtual magic carpet, and they danced in a high-tech version of DDR

We ate at a great Italian place with outdoor seating, and watched the crowds escalate. I was hoping we could find some fun mementos and enjoy a little shopping but again it was shoulder to shoulder in the shops. By 10 pm everyone was really exhausted, so we gave up. Lesa and Erik love to shop crowds or no crowds, so I felt bad we had to drag them out of a huge Disney store!

We didn�t get to bed until after midnight, and had to get up at 6 to return the rental and get to the airport for our flight. Everything was smooth (except for the little boy playing drums on the tray behind my seat) and the big kids all slept for the 3-hour flight. Aron slept a little and read a book. I am AMAZED at the energy this kid has. He sleeps less than any of us and never complains about being tired. In the shuttle to the parking area he was going on and on making up difficult math problems to solve. We were all so brain dead we couldn�t even follow to check if he was doing them right. We just agreed with him.

There is so much more to say about the trip and I may have to pop in a few mini stories later. Overall I am SO impressed with how much we all enjoyed each other�s company. Even standing line was fun with the joking around and good-natured attitudes of the kids. Almost complete absence of grumpiness! I really pushed them to the limit and should have allowed for more down time, but knowing there was very little chance of ever going back�I really crammed about two weeks worth of stuff into 6 days! So they put up with my marathon planning extremely well!

So that is all for now. PLEASE continue to pray for Erik. We can�t express how much this means to us. It is naturally discouraging for him to return to chemo, and yet he is excited for his college plans. Please pray everything works out.

Please continue to pray for our many friends in very tough places�Austin, Emily, Katie, Max, Sam, Nick, Tori, and those who have lost their children�

Blessings!
Donna

Thursday, April 10, 2008 8:58 AM CDT
WEDNESDAY MORNING UPDATE:

We are having an amazing time. It really is possible to get your mind off fighting cancer...incredible.

We went to Epcot, Animal Kingdom, and Sea World so far. Today is Hollywood Studios, tomorrow is Magic Kingdom! Last day will be a return to Epcot (and a waterpark prior to Epcot).

We are all enjoying everything so much. Just no words to describe!!!!

*
FRIDAY MORNING EDITION/ADDITION:

We made it to the Twin Cities last night! It was truly a death-defying feat, I assure you. Poor Paul put up with my white knuckles (and occasional commentary) good-naturedly. What a stoic. Kids were great. It took us over 6 hours to get here, but the last two hours were really treacherous. Cars slung along the side of the road, almost no visibility, and max speed was 30 mph. Ice, sleet, and snow coming down fast and furious, with raging wind and lightning!

Praise God! Now we are camped out right near the airport at the Air Force reserve base, waiting for our flight tomorrow! And I was exceedingly happy to get seats on the plane this morning--all together! They released the last 10 seats this morning and I got six of them! This is Aron's first time on a commercial flight. His only flight experience at the ripe old age of 8 is on Air Force in-air refuelers to and from Hawaii, so he only knows VERY COLD and VERY LOUD aircraft with jump seats. He is intrigued that we all get a seat, and he doesn't have to wear hearing protection or a parka!

INFINITE THANKS TO LUNCH FOR LIFE AND MARK DUNGAN FOR MAKING THIS ALL POSSIBLE!!!!!!!! Mark's daughter Sydney has been through extensive testing for relapse lately so Mark has had much more than the usual busy life to deal with lately, and he has made many last minute arrangements to make this a dream come true!!!! THANKS MARK!!!

Florida here we come!!!!

********************

Tragically our little friend Tyler Stolp ended his fight yesterday, and we pray for his Mom Dawn, and his sister Ashley, and all those who love Tyler. He really did give the very best hugs imaginable.

Please pray for Austin Melgar who was transferred to Michigan PICU from Vermont. He has been in a coma three weeks.

Also please pray for Amber (Camp Sunshine friend who relapsed with Ewing's sarcoma) who found out she relapsed again.

We are leaving today for the cities since more snow is headed our way, and we don't want to take the chance of missing our flight on Saturday.

Erik is still coughing a bit, but otherwise feels great. His doctor moved up his next re-evaluation from the first week of June to the first week of May. He'll have scans and biopsies after the next round of chemo which will last two weeks after we get back.

We appreciate your prayers more than we can ever say. Blessings to you all,
Donna

Tuesday, April 8, 2008 7:14 AM CDT
*
UPDATE LATER TUESDAY:

Well, his platelets are low (60K, needs to be 75), so he could not have started chemo anyway. That means the "big break of five weeks off chemo" is really only one week.

Erik's doc decided to move up his next re-eval, so next scans and biopsies are set for first week in May instead of first week in June. We appreciate prayers for clear scans and clear biopsies NOW more than ever!!!!!

****

WOW that it the most fuss I've ever seen for a birthday! Really! Thank you for the kinds words!

So on to more important matters! Erik is feeling completely well, and went for a four mile walk before the BIG snow and then shoveled for hours yesterday. He had counts done yesterday, but I don't know what they were, so I need to call the clinic today.

We are getting very excited about the trip to Florida, we leave on Saturday!

Tomorrow we go to Fargo for another dermatology appointment for Paul (still itching!) and do a little shopping to make sure everyone has shorts and flip flops.

Blessings to you all, and please continue to pray for Austin and Tyler.

Donna

Saturday, April 5, 2008 2:10 PM CDT
Hey everybody! It's Erik... Just wanted to make a quick announcement that I'm sure my mother would overlook to add on caringbridge...

IT'S HER BIRTHDAY!

I know she wasn't thrilled about a day celebrating her age... so I'd like to turn it into a day celebrating how much she's done for me and the rest of the Neuroblastoma community! THANKS MOM!!! Be sure to leave a message on the guestbook for her!

Friday, April 4, 2008 9:36 AM CDT
Yesterday was a better day. His throat is still bothering him but it is better. His doctor called yesterday and said he does not have to go on a prolonged course of acyclovir because all cultures are negative.

Erik went for a walk yesterday and wiped him out but he went to bed early again, so that is good!

Thanks for thinking of us! Please continue prayers for Austin and Tyler...

Blessings,
Donna

Thursday, April 3, 2008 8:18 AM CDT
Still resting and recovering....

Erik really does not feel well. But no fever yesterday. I am a bit frustrated we don't know what this is. He spent the entire day in bed, throat still hurts, eating and drinking too little, and went to sleep early last night. That is not Erik for sure!

He is discouraged to still be feeling so lousy, and missing his friends at Camp Sunshine adds to the gloom. But you are all right, he has to get better for next week and his trip to Florida!!!!

So, another day of pushing soup and tea.

Please continue to pray for Tyler Stolp and Austin Melgar who both need continuous prayer! Austin is still in a coma and his parents and four siblings are 800 miles from home in VT waiting for him to wake up. Tyler also wanted to be at Camp Sunshine, but looking at the photos of this beautiful boy, you'll see how fragile he has become...pray for his wonderful Mom Dawn.

Blessings!!!!

Donna

Tuesday, April 1, 2008 8:44 PM CDT
Thanks again for praying.

I have so much on my heart. Two little friends have passed away who fought neuroblastoma-- Anna Dahl, a three-year old in Minnesota who was diagnosed a year ago and was refractory...and Emin, a precious little 6-year old boy in Finland who stole my heart a long time ago. He was diagnosed three years ago, half of his life ago. I really felt he was one of those few who would make it. I don't know why I felt this so strongly. I prayed so much for this sweet boy. They both died last week (27th and 28th) and I am devastated by the loss of such beautiful children with such beautiful families. Please pray for these families. Anna has a baby brother and Emin has a baby sister.

Also Austin Melgar is in a coma and desperately needs a miracle.

Erik was released this afternoon. He still doesn't feel well, even though he is better than when he went in. They will call us with results of the viral cultures, but he'll continue on acyclovir anyway. If the viral culture is positive, he'll continue for a longer course of a lower dose of acyclovir. Sweet Cherie was able to visit him quite a bit, but it cost her in terms of sleep and studies! Pray she gets some sleep and is able to catch up in her studies. It was so fun to brag about her to all the staff!

Lastly, thanks to Lisa Bonnet in Australia there IS a way to get email notices for updates to this site if you are interested, to sign up go to http://www.blogarithm.com

Blessings to you all,
Donna

Monday, March 31, 2008 5:08 PM CDT
Well, Erik is feeling somewhat better. Still had a fever last night, and low grade this morning. Both sides of port cultured again this am. No results on viral studies, so we'll be here until tomorrow most likely. The pain is better in his throat and he is off morphine drip and on oral pain meds now, and seems to be doing okay, except not eating or drinking much.

I should have taken a photo of the snow out his window. It is breathtakingly beautiful.

Blessings dear ones, and thanks for praying. We have so much to be thankful for!!!!!

Donna

Sunday, March 30, 2008 8:36 AM CDT
Mystery is not yet solved. They did blood cultures, more viral studies, and more throat swabs. No results yet. The pain is from a lesion in his esophagus close to the collar bone level. Even on continuous morphine drip he can hardly swallow. Low grade fever came back again last night (under 101). So we wait for answers and try to keep him comfortable. Hopefully one of the drugs he is on will fix the problem!

ANC is 900 (not bad) and platelets dropped a bit to 45.

Thanks for praying. Trying hard to be thankful instead of pouting about Camp Sunshine. Poor Erik! He loves those teens and it means the world to him!!!! More sniffs.

More soon!

Blessings,
Donna

Friday, March 28, 2008 11:05 AM CDT
*

SATURDAY NIGHT UPDATE:

Erik was admitted this afternoon at U of MN (5B) and is now getting antibiotics, antifungal, and antiviral drugs, and morphine for the pain in his throat. Please pray for speedy recovery. Camp Sunshine is looking bleaker still....sniff, sniff. We are so disappointed after looking forward to this all winter!!!!!!!

Please pray for Dahl family.
www.caringbridge.org/visit/annameg

*

FRIDAY NIGHT UPDATE:

Erik's 102 fever continued today, so we went back in to the local clinic and spent another 5 hours getting more blood cultures, strep test, influenza A & B tests, and more IV antibiotics. Everything came back negative so he is getting oral antibiotics for a week and now we are waiting from Camp Sunshine's Dr Andy to find out if we are allowed to come! Erik still doesn't feel well, but fever seems to be over anyway. Little bit of a cough remains, hopefully tomorrow he'll be feeling better and we will be able to go!!!!

******

UGH! Erik had a fever of 102 last night, and a late night visit to the local ER for blood cultures, a dose of IV antibiotics and chest x-ray, a requirement for anyone with a port or a central venous line. This is a precaution against an infection in the port which could cause very sudden sepsis (which is deadly).

He has had only one other fever 15 months ago�so we have been EXTREMELY blessed! The last one was when he was still living in the cities (Jan 2007), and he had to take a cab to the hospital in the middle of the night. He was admitted for a few days even though his white cell count and ANC were sky high (WBC 14.5 and ANC 10,400!)�but the ped onc fellow on call at the U of MN last night said they would only admit him if his ANC was below 500. His ANC was 800, so no admission! Thank you God.

So PLEASE PLEASE PRAY he recovers FAST so he can serve as lead counselor of the teens at Camp Sunshine!!!! We are supposed to leave TOMORROW!

The good news is that Aron had the exact same thing (sore throat, fever, cough) and was feeling perfect after only one day of really feeling sick. So I am praying Erik will recover just as quickly.

Thanks for praying!!!!!!!

Blessings,
Donna

Saturday, March 22, 2008 9:58 AM CDT
We had the most WONDERFUL celebration of Erik's 23 years on this planet. God is so good! What an incredible blessing to have Cherie join us, and Raeanne and her mom came too. We chowed down on Erik's very favorite meal (turkey and stuffing--doesn't matter what else is on the table as long as those are present). Cherie brought a new game called Whoonu that was great fun!

The snow almost kept her here another day but poor Cherie had a load of physics homework to complete, with two tests next week, and needed to get home to study! Thankfully she made it home just fine, even with upwards of eight inches of snow south of us!

It sure doesn't look much like spring. But it is coming. We'll celebrate Aron's commitment to Jesus tomorrow as he is baptized and celebrate the resurrection of our Lord Jesus!

Blessings to you friends. While my heart is continually heavy for the little children suffering (URGENT prayer is needed for Austin Melgar and Anna Dahl--links above) and I am always begging God for healing, I am also constantly amazed to see His hand at work all around us, and very thankful for the incredible blessings He has showered on us.

How are we doing? Better than we deserve.

Praise God from Whom all blessings flow!
Donna

Monday, March 17, 2008 7:40 AM CDT
Erik is done with chemo for a while, so I start to fret (again) about another long break from chemo. Ugh! This week is Cherie's spring break AND Erik's birthday is on Wednesday! He will be 23!!!! She is coming and we will have a turkey dinner for him.

He is still working on websites, and planning for the next Camp Sunshine session. He will be lead counselor for the teens again, and I am slated for the 9-12s ("Tweens"). We cannot wait!!!!!! We will be there the first week in April, then we have one week home, then a week in Florida, which we are all looking forward to very much.

So he will not be able to get a two-week run of chemo in until end of April. Please pray the disease doesn't notice and grow in the meantime!!!!

Lesa and Aron were in a wonderful play production last week (Saga of Lucky Star) and it was so much fun. Unfortunately Erik couldn't make it through to the end (feeling sick from chemo) and Paul had a bad cold.

Karl is enjoying his new job working for a mason (and wonderful friend). He is really enjoying the physical aspect, since the last couple years of being a computer jockey doesn't produce much in the way of muscles!

Paul's mystery rash is still there, but better, and anti-allergy type medicines are helping tremendously with the itching.

I teach an ACT prep class that finishes tonight, and I always enjoy this "diversion" very much. Good mental therapy!

AND HUGE NEWS FLASH--Aron is getting baptized at the Sonrise service on resurrection Sunday!!!! Erik was also baptized at 8 years old, also on Resurrection Sunday after he finished "isolation" after transplant in 1992. We'll have a big day celebrating new life!

Lastly, I had the very great pleasure of spending time with a dear friend this past weekend who is also a cancer mom of a "big" boy-- Pam Walz�s son Nathan recently finished treatment for non-Hodgkins lymphoma, and is getting ready for the college adventure next year. We had plenty to talk about! We went to the annual survivorship conference at the U of MN and it was wonderful to spend the time with her and to be encouraged by some of the great information at the conference.

Thanks so much for your continued prayers for us, they are truly sustaining us. Please pray for the cancer to completely die off and for wisdom in planning the next steps for treatment. Also, please continue to pray for Tyler Stolp, Austin Melgar, Anna Dahl, and Emily Adamson, among our many small friends who are fighting this disease.

Blessings,
Donna

Monday, March 10, 2008 10:08 AM CDT
Erik is feeling great, but tired!
All in all it was a great experience for our Hero. I am so amazed at all he did on his own, feeling icky!

So here we go, second week of chemo in Park Rapids. This will make 8 rounds total of this combo for the past year, which included a chemo break last summer, and progression on two rounds of fenretinide. I am praying very hard this clears him completely by next scans and biopsies, which will be sometime in May after his next round in late April.

Thanks for all the nice feedback on Erik's presentation last summer in Chicago! Click on conference photo above if you haven't seen it yet.

Next week Erik turns 23!

Monday, March 3, 2008 5:18 PM CST

Later on Tuesday....

THANKS AGAIN for praying!

CT looked fine. No hernia. No NB in weird places. His awesome NP Jody just called me to let me know. Are we all getting that she is the greatest person ever?

And I was THRILLED that he got up early (with empty stomach for CT, then chemo following) and went to the hospital three hours early to see if he could visit a little person fighting NB. He was worried little Jordyn would be feeling lousy (she is in transplant for NB), and her parents would be busy, but decided to try anyway. I am so happy he got to meet Jordyn's mom Jodie!

Erik truly feels this is his most important reason for being here! He loves and identifies so strongly with these amazing little ones. He loves connecting with them. I hope he can see little Jordyn feeling better later...maybe she will be able to come to Camp Sunshine!!!!

We really appreciate your prayers this week dear friends.

Erik is at the U of MN this week getting chemo by himself, with Cherie keeping an eye on him as she is able after classes and work. She is swamped with studies...so very busy week� for both of them.

Erik saw the surgeon before chemo. Surgeon ordered a CT for tomorrow to make sure things are okay. Hmmm, I wasn�t expecting that. Please pray everything is fine!

This is a big deal for Erik to do this by himself! He has to juggle five different meds several times a day, keep track of empty stomach vs times to eat, (tomorrow he has two contrasts to drink on empty stomach, then antinausea drugs, then oral chemo exactly 1 hour before IV chemo, etc). There is a shuttle for getting back and forth to the hotel, and a dozen other details. Feeling really sick does not make this a very pleasant adventure.

But it is an adventure, and we are so proud of him!

Macho, macho man!

Blessings,
Donna

Saturday, March 1, 2008 9:52 AM CST
*

Later Saturday....

We just went to the emergency room here, we were both getting nervous because he said it hurt and he couldn't push the bulge in.

I am so relieved, after a thorough exam the doctor in the emergency room said it is definitely NOT a hernia. He thinks there is "stuff" built up around the sutures, and usually only can be felt in someone as thin as Erik.

Thank you God! He will go to the cities for chemo, and the surgeon will take a peek at it on Monday, but we are very very relieved.

Chemo is on!

Thanks so much for your continued prayers. Everything is going great. Except yesterday. Erik noticed a "bulge" under the middle incision (along his old incision just under the sternum)--it is horizontal. The bulge is 3-4 inches long and 2 inches wide.

I called NP Jody, she said to call the surgical oncologist on call. He said since Erik can push it in, it can wait until Monday. So Erik will see the surgeon again this Monday and we'll find out if he is getting chemo or hernia repair. Argh.

He was scheduled to get one week of chemo at the U and the second week here since two of our chemo nurses are out.

Looks like it is stomach rather than intestine...not sure if that is good or bad. We'll find out Monday!

Blessings to you all, praise God for every day!
Donna

Monday, February 25, 2008 9:25 PM CST
REALLY GOOD NEWS!

No sign of bile duct obstruction!

In fact, his LFTs (liver function tests) are ALL in the normal range for the first time in ages. Praise God!

His surgeon is very pleased by how Erik looks today.

Erik is still sore but off narcotics since Saturday. Eight hours in the car today plus clinic time and no worse for the wear...he is actually immersed in a web-design project right now.

Now we just have to figure out when to do the next chemo, complicated a bit by our oncology nurses having grandbabies (twins and a premie with a mom with kidney issues), upcoming travel plans to Camp Sunshine and Florida, and educated guessing at when Erik's counts will allow further rounds. Stay tuned!

Bless you friends!
Donna

Saturday, February 23, 2008 4:12 PM CST
Maybe Peter Pan was on to something. My advice to all my ped cancer friends: if you have a pediatric cancer even though you are 22 years old, for heaven's sake throw a fit and insist you are hospitalized on the pediatric oncology floor. DO NOT under ANY circumstances allow anyone to admit you to an adult "surgical oncology" floor.

Now seriously, how much complaining do I do?

It was a nightmare! I cannot believe Erik was only on that floor 16.5 hours, and it was by far the worst experience ever. EVER. And with his LONG list of hospitalizations for a multitude of reasons, believe me, we have many experiences to compare... I will spare you the incredibly long list of details of shockingly poor care...really I cannot think of one positive item that occurred from the moment of his botched arrival at 6:30 pm to being literally pushed out of bed at 8 am while writhing in pain because they wanted to get the room ready for the next patient....I really I think we fell in a time/space warp and landed in a third world country. His surgeon was very nice but was at another hospital on Friday, so he saw a resident only before discharge.

After all my enthusiastic praise (recent post) for how well Erik has been treated by all medical professionals since the beginning of this relapse journey almost three years ago, I feel a bit hypocritical. I said "we never ask or expect such treatment"...

So the truth is we are spoiled ROTTEN and getting a taste of perhaps more "ordinary" care in a hospital has shocked our systems!!!!

But I have to tell you IF our favorite NP Jody was in charge, none of this would have happened. She came to see Erik (just because she is so wonderful, not because she was supposed to!) and I could see on her face she was not pleased. Unfortunately since Erik had an adult surgeon, our docs were out of the picture.

We are THANKING GOD it was laproscopic surgery because if he ended up with open surgery and had to stay there a 5-6 days I would have been screaming!!!!

So on to a better story. Right before he went into surgery I ran into a flower shop to get an arrangement made for our NP Jody Dahl, because she is the brilliant lady who figured out what was going on with Erik after 4 months of intermittent symptoms (far from a "no-brainer" since gallbladder issues are exceedingly rare in his sex/weight/age group). This happened to be when Dr Neglia was in Hawaii, and she arranged everything for Erik to get the problem fixed, without bothering Dr N on vacation. When the surgery was scheduled, the surgeon called Dr N after he got back and told him, but no one told Jody (I of course called her immediately when I heard the surgery date/time, and she jokingly complained that she was left out of the loop).

So on the card for the flowers we wrote "Nice work Dr. Diagnosis! Jody you are THE BEST! Love from Erik and Donna"

I dropped the beautiful arrangement of tulips at the clinic since Thursday is her clinic day, and told the receptionist to please make sure Jody got the flowers. Then I dropped off Erik at the hospital front door with five minutes for him to get upstairs to pre-op, then parked the car.

She came to see me when I was waiting for Erik to come out of surgery in the family waiting room after she got off work, flowers in hand. You can imagine how people in this field (pediatric oncology) hear plenty of complaints when their children aren't doing well, but rarely the accolades they so deserve. She is one of the most amazing people I have ever met! I was so pleased it created the stir in the clinic I was hoping for her--she said a patient had NEVER sent her flowers!

Really I cannot say enough good things about Jody. She is absolutely beyond amazing in terms of brilliance and kindness.

Cool huh.

By the way, a January 2008 survey of Twin Cities medical professionals highlighted who they chose as top-ranked doctors and for pediatric oncology our beloved Dr Neglia was chosen as top in his field and who other doctors and nurses would choose to treat their own children for pediatric oncology. SEE article on U of MN Physicians and scroll down to "Pediatrics, Hematology-Oncology"

But I believe I know one of the reasons�he has Jody on his team!!!!!

Erik is sore, but eating and working on websites. I am hoping his digestive system �wakes� up the rest of the way�or he�ll be miserable by tomorrow. He sees the surgeon on Monday.

Thanks for your prayers and well wishes for Erik's recovery!
Donna

Thursday, February 21, 2008 8:45 AM CST
*******
UPDATE: 4 pm and in recovery!

The surgeon was able to remove the gallbladder laproscopically even though it was very difficult, and took much longer than if they had done an open surgery. The gallbladder was scarred and "glued" to the liver from the prior radiation, and very inflamed. He did have a hard time getting it out (it was "friable") and fell apart--gallstones fell out and they had to pick them out. There is a chance that a gallstone fell into the bile duct, which will cause problems by Monday, so we have to come back to see him and have it checked out. If there is a problem they'll try to do ERCP right away.

Erik will be happy when he wakes up--the surgeon printed out several photos for him!

So, if he does okay tonight, he'll go home tomorrow, back here on Monday, and we'll hear then what his oncologist wants to do about starting the next round of chemo.

Please pray for no stone in the bile duct!

THANKS! Donna

*
thurs afternoon--

after delay... delay.... they took him back at 12:30 pm

Platelets were just barely high enough today (thank you God)--last week they were 190s and today 60s (have to be 50s). whew.

more later! thanks for your prayers--Donna

*
Hey everybody, it's Erik! Just a few minutes before I have to leave for my surgery today... just wanted to let everyone know I'm not worried about it at all... I mean I really hope I won't be in a whole lot of pain afterwards, but this procedure marks the 30th time I've been put out for surgery (somewhere around 30 anyways). It will also add one more scar to my repertoire... funny how many scars I've gotten in my lifetime. Here's my collection so far:

(1) A nice sized scar, spanning half way across my belly where they removed my tumor in 1992.
(2) On the left side of my head. I fell on a metal pole when I was young.
(3) On my right wrist--broke it playing basket ball on a trampoline.
(4) A scar on my left hip from the bone graft they removed for that wrist.
(5) On my left wrist... carpentry accident involving a buffer and a fair amount of stupidity.
(6) A little one worth noting on the inside of my left leg from a failed attempt to jump a barbwire fence.
(7-10) Scars covering the holes of my previous hickmens.
(11) From the port placement.
(12-13) From many, many bonemarrow biopsies.
(14) I'll group together all the tiny ones from IVs over the years.
(15) One more only a select few know about...

This new one will be No. 16. Sometimes it feels like I've been cut up more than frankenstein himself... but thats what happens when you've fought battles. They leave scars. I'm proud of my collection, and it just happens to be a great conversation starter at swimming pools and beaches!

Tuesday, February 19, 2008 7:53 AM CST

Wed night update: surgery is scheduled for Thursday morning at 10:30

and yes, we drove back to the cities today (wed) since he has to check in EARLY...! And YES it was cold this morning! Brrrrrr!

Surgery confirmed for Thursday (2/21) morning!

Well, yesterday was a long day.

Left at 9 am, had to stop and get car checked (it was shaking and turned out there was ice stuck on the insides of the wheel). A little white-knuckle driving for 4 hours due to the icy patches and then there was an accident at the tunnel, so we just made it in time for his MRCP (MRI of gallbladder and bile ducts with special contrast) at 2 pm. Two hours later we saw the endoscopy expert (really incredibly nice man) and he looked at the MRCP scans with us on the spot (without the benefit of the radiologist report) and could tell immediately Erik�s gallbladder needs to come out. He spent a fair amount of time with us explaining the ins and outs of why, and then it was clinic closing time.

So then he spent time canceling the procedure in the OR scheduled for today (ERCP), calling Erik�s oncologist, and calling all his surgeon friends to see who he could find to do a surgical consult right then. One issue was--should it be a pediatric or adult surgeon? A wonderful oncology surgeon (adult) came BACK to the clinic to see Erik after he had already left for the day!

I can never get over how well Erik is treated! These people are just amazingly kind and consistently bend over backward to make things convenient for us. We never ask or expect such treatment!

Cherie was able to join us after her classes, and the surgeon went over the procedure again for her! Of course Erik�s history is long and complicated, and he had MAJOR surgery in that region since he had right adrenal primary tumor removed, along with lots of lymph nodes, and 2400 cGy of radiation to his right abdomen all in 1992. The surgeon said he has to do an open surgery because the radiation can make the gallbladder scar or stick to the liver, so he will not do it laproscopically.

So after signing the papers and getting instructions, we canceled the hotel and took Cherie out for dinner. We finally left around 7 and got home at 11 pm. Roads looked iffy in the cities (it was snowing) but improved as we headed north and thankfully Erik drove home (I am tired!).

So this morning I wait for the schedule since the OR scheduler was gone for the day yesterday. I am hoping very much they can get him in this Thursday. Generally these are not considered �rush� surgeries, but I mentioned as often as I could how many weeks Erik had been off chemo already�

If they can�t get on the OR schedule this Thursday, it will be next Thursday. The surgeon said it would be 3-5 days inpatient, depending on pain and complications (and complaining). He said young men are the worst about complaining and old women are the best. Cherie and I chuckled at that, but we know Erik, he is pretty tough!

So bottom line is�I am very relieved we are getting to the source of the liver issues (and abdominal pain) and it is a relatively minor event and very fixable. I just hope we can get this going soon.

Meanwhile I beg you to focus MUCH bigger prayer efforts toward Austin Melgar who is in very dire straits at this moment and needs a huge miracle for a treatment option and little Anna Dahl who just had very complicated dangerous surgery in NYC yesterday while suffering from progression of disease�a very scary mix.

Thanks for your prayers dear friends,
Donna

Wednesday, February 13, 2008 8:30 AM CST
I have been pokey at updating what is next--just spending days by the phone accomplishing nothing! Fun.

The plan is really confusing.

Erik will have an MRCP on Monday (a MRI-type test on gallbladder/pancreas/bile ducts area) and then see a doctor who specializes in endoscopic procedures after the MRCP. Depending on how the MRCP looks, he'll go in the operating room the next morning (Tues) for ERCP or endoscopic ultrasound. He may or may not spend one or two nights in the hospital.

I am just hoping things go smoothly, and they can fix the problem. I am frustrated because he is supposed to start chemo next week. This will be another 4 week break. I keep wondering how this chemo is even working when he gets a month off between chemos and he is supposed to only have one week off! Putting it off another week also goofs up the plans for Camp Sunshine and trip to Florida. Argh. But I should be thankful he is doing as well as he is... PLEASE pray for Austin and Tyler who are in great need of prayers--and miracles.

Erik is feeling well, and is only a little symptomatic of the problem with bile duct blockage. No more extreme pain, but eyes are still yellow and other GI issues.

He has been working long hours on learning everything webdesign-related, and is giving a presentation on one of his websites tomorrow (drug and alcohol task force)!

Blessings to you, and thank you so much for your endurance in praying for us and for our little friends.

Donna

Friday, February 8, 2008 2:17 PM CST
extra note
Great question about why not just remove the gallbladder. It was my first question too! NP said it won't fix the problem, since the bile duct is still needed even with gallbladder removal to drain bile continuously from liver to upper intestine. So if it was removed, the stricture or narrowing in the duct would still be a problem. Also, the report did say he has "sludgeballs" in his gallbladder and in the duct, so he may still have problems with stones. Could need removal eventually. Also, the stents usually have to be replaced periodically.
*

After our exciting GREAT news last week, Erik felt sick and had stomach/chest pains Friday and severe pain on Saturday. By Monday his eyes were yellow, so I called our NP and asked if she wanted liver panel done again (which was just done 4 days earlier).

His bili was up, to 1.7, and liver enzymes up again. She wanted us to return to the cities yesterday for an ultrasound of his gallbladder.

Another oncologist read the ultrasound results (our doc is in Hawaii this week!) and recommends surgical consult for stent placed in gallbladder because there is a stricture in the bile duct. We are waiting on call back from the surgeon. Surgery will probably be next week.

In the list of reasons why this happens: radiation therapy. Surprise, surprise. Erik had 2400 cGy to his right abdomen after surgery to remove his primary tumor in 1992. His gallbladder is only half the size of normal, and so is his right kidney.

We appreciate prayers for smooth procedure! We'll know more what to expect when we talk to the surgeon. Hopefully this will solve the mystery liver issues he has been battling for a while, as well as periodic severe abdominal pain.

Thanks always for praying!!!!
Donna

Thursday, January 31, 2008 8:26 PM CST

SAT MORNING ADDITION:

Yes, there is more good news!!!!

Erik's doctor called while we were on the way home yesterday....

BONE MARROWS ALL CLEAR!!!!!!!!!!

YAY IS AN UNDERSTATEMENT!!!!!!!!!!!!!!!!

We had an AWESOME time visiting with Nathan and the wonderful Walz family last night on the way home!!! THANKS WALZ FAMILY for celebrating with us!!!!

******

THANK YOU GOD!!!

Thanks for praying dear friends. Scans looked excellent--"almost normal"!!!!!!

While all SUVs were actually in the "normal range" the radiology report states that there remains "patchy diffuse increased FDG uptake involving at least 10 percent of the skeleton, greatest in bilateral femurs and sacrum, as well as lumbar and thoracic vertebra."

Report states--impression: interval decrease in areas previously involved, FDG is within limits of normal or borderline increased in these areas.

This is of course better than expected by Erik's team. It is truly miraculous he is still chemo-sensitive after 2 and 3/4 years after his first relapse. His doctor is extremely pleased, and as we guessed, he wants Erik to continue on this winning combination of chemo for three more rounds and reevaluate this spring. The goal is to get two weeks of chemo in (same dose), with two week break. So we appreciate your prayers for Erik's counts to hold up.

They were also very impressed with how good Erik looks. Really, no bias in this report, but he looks like a million bucks. Hair seems to be thickening, color looks wonderful, and he is up to 165 lbs!!!! WOW!!! That is 15 lbs gained in 1.5 years since his low after his transplant (very good for just under 6'2" tall). He played three hours of volleyball on Monday night (that's shortly after a week of chemo) and feels great.

Biopsy went very well this morning, blood pressure fell and he needed extra saline, but that is normal for him. We will probably get final results next week.

He is celebrating with a "comfort food dinner" of chicken pot pie (or something along those lines I'll bet) at Baker's Square with Cherie, while I type this and watch Food Channel. Can't help but think of one very sweet little preschooler Penelope who loved to watch food channel when she was going through endless treatments. I wonder if she is cooking in heaven.

We are praising God for His goodness and mercy! How I wish all the little fighters were responding as well as Erik.

Thank you so much for your prayers and concern for Erik! Please continue to pray for Tyler (link above).

Many blessings to you and thank you for rejoicing with us!
Donna

Tuesday, January 29, 2008 11:28 AM CST
New scan plan: schedule for Friday was nixed so Erik will have his PET/CT tomorrow (Wed) at 3:30 pm. His biopsy will be bright and early Thurs morning (7 am) and we'll see his oncologist later Thursday morning after he recovers from the marrow biopsy.

Please pray for good news. It is likely if anything is visible on the scan his doctor will want him to continue with this chemo. I am praying that his scans will be clear. We won't know anything about the biopsy until probably Monday, so it is likely no final decisions will be made about potential treatment changes until next week.

Have a wonderful day!

Thanks for your prayers for Erik,
Donna

Friday, January 18, 2008 1:01 PM CST

*
Update Wednesday Jan 23: Erik did start chemo Monday, ANC up to 900 and the rest of the liver function tests continue to fall. He is feeling pretty good and getting quite a bit of work done on his websites. Please pray for the Liesers who just lost their sweet 2 year old Isaac (website below).
**
Thanks dear friends for your prayers!

Liver function tests much improved since Monday, panic over.

Erik's AST dropped from 358 to 62 and the ALT dropped from 690 to 265 (7x upper limit of normal). LDH is back in the normal range at 214 (135-225) and so is bili at 0.8. Whew.

Praise God! Clearly this is not disease progression, or even something mean and nasty as mono--it would not have started to clear so quickly, and he is not sick at all.

ANC is only a tad low at 700, needs to only climb to 750 by Monday for chemo.

So the plan is to have week one of chemo next week, then skip the second week while he goes to U of MN for biopsies and PET/CT scans. We'll see his oncologist on Friday Feb 1 for results and discuss changes, if any, to his treatment.

God is so good! While I was commiserating about ups and downs with another mom who walks a fine line with her own very tough balancing act, I told her I feel like I walk a tight rope, and most of the time I can do it fine and sometimes even make it look easy. But all it takes is one push...

The next day I was thinking about that silly statement, chiding myself, what am I saying!?!?

I am not walking a tightrope at all.

I am riding in a wheelbarrow that my Lord God is pushing on that tight rope. Instead of foolishly thinking I have to find the balance and strength, living between panic and terror, all I really have to do is look over the edge and marvel at all that is His, all that He does, and all that He cares about, and ride. That is trust. That is belief in Jesus, belief He is enough.

Isn't that what Abraham had to do as he marched up to Mount Moriah? I thought about the line of "encouragers" he might have had to listen to on the way up the mountain. What would they have said?

It is so easy to shout from the sidelines "Put Isaac in God's hands!" "Trust God for everything!" "Draw close to Him, He'll draw close to you!"

Abraham was no fool. He rode all the way across that gorge in the wheelbarrow, looked over the edge, and marveled.

Bless you friends. Do you believe He can push the wheelbarrow on a tight rope? Why not get in the wheelbarrow? The view is just awesome.

Please please pray with us for Anna, Tyler, Austin, and the grieving Lieser Family who just lost (Wednesday Jan 23) precious Isaac.

Love,
Donna

Wednesday, January 16, 2008 10:59 PM CST
YAY!!! Another surprise visit from beautiful Cherie today! Erik and Cherie went out for a nice dinner.

Another surprise, not so good. Erik's NP from the U of MN called and asked if I knew how high his LFTs were on Monday. I did not. Turns out his liver function tests are really high all of a sudden (ALT is 20x upper limit of normal at 690 and AST is 10x upper limit of normal at 358). LDH is 2x upper limit of normal and bili is also a little high.

Please pray this has nothing to do with disease progression (which has been showing up with pain first). We are hoping this is viral. Could be mono. His LFTs will be checked again on Friday, but unlikely he'll be getting chemo next week.

Stay tuned and please pray for Erik.

Blessings,
Donna

Monday, January 14, 2008 5:39 PM CST
Bummer dude.

Bummer for mom that is, since she freaks out over too much time off chemo, and by contrast GREAT news in Erik's estimation. Another week off chemo. Make that FIVE weeks. And it is supposed to be ONE week off chemo between rounds....

An ANC of 400 flunks first week of chemo (must be at least 750, and second week has to be 500).

The best guess is that a virus is chewing up neutrophils, since his counts never actually dipped low enough to NOT get chemo the past FOUR weeks off...

UGH!!!

So while he DID have a fabulous time in Montana, and DID get to snowboard (with awesome counts), he probably picked up a bug. Airplanes are great places to do that.

So Erik is working fast and furious on our computer service website (it is looking IMPRESSIVE!) and he even got a call while in MT to design another business website. He has three other sites to finish. He has plenty to keep him busy!

So counts on Friday, chemo hopefully next week, then the second week of chemo may have to be done in Minneapolis WHILE also getting scans and biopsy done since his doctor will be on vacation the following week.

I should know better by now. After being so awed by his high counts this entire past four weeks, I gave him the Temodar to take (one hour before irino) since SURELY his counts would be high enough, right?

So now he has one dose of Temo he wasn't supposed to get, and we need another prescription for one dose of Temo next week. Oh bother.

God is good anyway. Especially to Erik! Please start praying now for GREAT SCANS and BIOPSIES on Jan 31!!!!

And please pray for Tyler Stolp, Anna Dahl, and Isaac Lieser.

Blessings,
Donna

Monday, January 7, 2008 9:42 AM CST
Be sure to see "view photos"--finally something new...!*

Erik spent Christmas at Cherie�s and we thoroughly enjoyed having her at our house for New Year�s. She brought us the game Cranium which is great fun! Everyone enjoyed her company immensely. We hated to see her go! She went to see her uncle Jeff who had a stroke--please continue to pray for him. She had to get back to work and starts back to school at the U of MN in a couple weeks. She has a heavy load this spring with 22 credits, but is still on Cloud Nine with her record-breaking acceptance to the PharmD program at the ripe old age of 19! Isn't she amazing?

Erik is hopefully enjoying snowboarding at Camp Mak-a-Dream right now (about 60 miles from Missoula, MT). He has always been a snowboarding fanatic, and to finally get on a �big� hill is a big deal. I never heard if 77K platelets is enough�hoping very much it is! The camp is for young adults 19-25 currently in treatment and he�ll be back on Thursday (Jan 10). Then he starts two weeks of chemo again next Monday.

Lesa came down with a fever last night, so I also hope Erik doesn�t catch what was incubating here before he left! Karl felt like he had the flu a few days before Erik left, and now Lesa is sick. I am pretty sure Paul does NOT have shingles, but he is going in today to see his doctor and get something to help with his itchy mystery rash that he has had for a month. The closest I could come to diagnosis (I found a dermatology site with thousands of photos of rashes!) is pityriasis rosea which is indeed a mystery rash. It may be caused by a virus (not known) and usually lasts 6-8 weeks. As long as he gets something to alleviate the itching, he�ll be fine.

The weather has remained glorious, so we have been spending a fair amount of time getting out, very unusual for me anyway. The kids enjoyed a magnificent day snowboarding at Andes on Friday. I love walking in the woods, especially when the trees are all frosted. Ineffable beauty!

We finally finished all 600 pages of the abridged version of Les Miserables, and Lesa and I cried our eyeballs out over the ending scene. We kept having to pass the book to Karl to read because we were too choked up. Somehow this struck Karl as hysterically funny so he was LAUGHING as he was trying to read the last few paragraphs! This did not earn him points as a "sensitive" guy. So then Paul had to try to read, but his difficulty with fine print was too much, so we passed the book to Aron. He finished it up gravely as Lesa and I wept (albeit with Karl's muffled giggles). Oy vey.

We are looking for another book with a happier ending!

Now it is time to regroup, get back to school work, and look at long range plans for the spring and summer. Of course it is wrought with unknowns with regard to Erik�s treatment. I am not as anxious about his disease response since he is doing so well and is so full of energy. I am hoping for very good news the end of January (scans and biopsy). It would be wonderful if his disease is minimal and he could get on the right combination of oral drugs to keep it stable or even keep chipping away at it, so Erik can be freed up to plan and do more of what he wants to do! Erik is very excited about speaking at a fundraiser in Chicago this spring, and of course volunteering at Camp Sunshine is a huge priority in his life. He is also hoping to volunteer at Camp KACE with Cherie again as well. There are a few other camps for him to look into�it is so good to see him thinking ahead and making plans!

Blessings to you dear friends! I am overcome with joy at the endless blessings lavished upon us each day. How can this be? We have come to know so many who are in the midst of severe trials and many who are in the long painful healing process after losing a child. My heart aches everyday for them. It has certainly drawn me to my knees in prayer. I see the hand of God at work everywhere, and praise Him for He alone knows our pain and our joy.

Blessings to you all,
Donna

Thursday, December 27, 2007 12:18 AM CST
December 27, 1991

Sixteen years ago today we found out why Erik had been running a fever on and off and limping for three weeks. By this date he was in excruciating pain and could no longer walk or sleep.

I remember exactly what I wore that day, and never wore that turtleneck again.

A bone scan showed bright spots all over his body. An ultrasound showed a mass in his abdomen. The doctor used the word "malignant." In those confused moments of complete panic and disbelief, I thought of Paul's sister Ann who died of melanoma when she was 16. I assumed Erik was going to die. He was immediately admitted--it was a Friday night. I called Paul who had just gotten off work, and blurted out "Erik has cancer." He left our 2 year old Karl with a neighbor and took a taxi to the hospital in Boston since we only had one vehicle. I drove home, a stunned wreck. The parking and taxi was over $100. I picked up Karl from the neighbor and said little more than "pray." I briefly talked to my sister, and she told the rest of my family who were at my parents' for the holidays. I have no idea how Erik and Paul fared that first night in the hospital.

At home, I squeezed Karl all night wishing the nightmare away. I couldn't sleep at all. I was violently ill.

Saturday morning I took Karl back to our neighbor, and went back to the hospital. Erik had an MRI and a bone marrow biopsy. Monday's biopsy results confirmed the guess they made, neuroblastoma. A double hickman was placed that day and he started chemo that night.

Seems so cavalier now to say "he started chemo that night." What a horrible night! I sobbed for hours reading all the side effects listed in the consent paperwork. I had no idea at the time how bad the prognosis was... What a nightmare. The fellow asked me if I "needed to talk to someone" which I took to mean "you're sad, someone can fix that too." Just a little sympathy would be more in order I thought. Of course I am sad!

But Erik was in so much pain there was no question something drastic had to be done.

A few days later he was in less pain. They wanted to get him on oral morphine so he could go home after the first round of chemo was done. Swallowing pills was simply not on Erik's agenda. Ugh! But soon it was apparent the pain was completely gone. After weeks of excruciating pain!

He walked out a few days later.

Thus Erik's journey began, and we were never the same.

~~~

Since that day, everyday, God has shown us abundant, rich living. He has given us purpose. He has blessed us immeasurably, even through the horrific pain of watching little warriors fall.

Since the day I first heard the word "neuroblastoma" more than 10,400 children in the US (mostly infants and toddlers) have been diagnosed--half with high-risk disease--and more than 4000 children have died of this disease.

"Rejoice with those who rejoice, and mourn with those who mourn."

While I rejoice over the long-term survival of many who have suffered so much and beaten such a terrible prognosis, I also mourn the loss of the many brave warriors we have come to know and love...Kendall, Penelope, Nate, Nathan, Paul, Elesha, Grace, Lillie, Hazen, Ryan, Bryce, Christi, James, Julia, Laura, Nick, Jack, Lucas, and so many other perfect children we deeply mourn but who now rejoice in His presence.

How I pray God guides and gives wisdom and insight to the many hard at work to cure this disease!

Wednesday, December 26, 2007 7:58 PM CST
WOW.

What a Christmas surprise for Erik!

We are so thankful for those who made it possible for Erik to win the trip to Disney!

Shocked. Overwhelmed. Overjoyed. Thankful.

Why is God is so good to us?

Blessing to all in 2008!

Love,
Donna

Friday, December 21, 2007 3:33 PM CST
It�s all good!

First of all the fund raising for the hu3F8 project is going extremely well�quickly approaching 2 million dollars! Extremely generous donors have made it possible to move up the time-table for the development of this new antibody. Sloan-Kettering is planning a meeting in January to update the parents and we pray the ball rolls quickly as there are so many kids that can potentially benefit from this treatment now, including Erik. CNCF/Lunch for Life may also be funding a new treatment, but I don't know what it is. Meanwhile please pray for our friends who are struggling to make tough treatment choices and undergoing difficult times�especially Tyler and Anna.

Erik went snowboarding yesterday with a friend, the first time he has been on the slopes since his first relapse May 2005. He had a blast and the best part is�no injuries or bleeding. We had a minor altercation in discussing his snowboarding plans--with me panicking and him maintaining his invincible stance. His platelets are on the way down since chemo ended last week so I had a fit he was planning to go this weekend. On Tuesday they were a whopping 138K (really amazing), so he got his way to go on Thursday (HGB 10.4, WBC 4.6, ANC 2600). He has been on an extreme exercise kick since chemo ended to get in shape for Montana and snowboarding at Camp Mak-A-Dream. He has been hiking our trails and pulling Aron on a sled all over the place�up hills and then he sends Aron flying down, then pulls him up again. It is great exercise!

The weather here has been beyond anything I have ever seen--breathtakingly gorgeous. Almost everyday we have had frozen fog, leaving everything coated with a thick white frost. The temps have been in the 20s and even topping 30, which is almost too warm�we sweat like crazy when trekking through the snow. Erik has been taking some ethereal photos, I�ll have to get them on my computer so I can post some.

I think Paul has shingles, but I am not sure. This could be a problem for Erik, not sure. Guess I need to make some calls.

Erik is planning to go to Cherie�s on Christmas eve. What a celebration for Cherie! She found out last week she was accepted to pharmacy school (pharmD program at U of MN) and at 19 is the youngest ever accepted there! She will spend only 6 years in college instead of the usual 8 for a doctorate in pharmacy! We are extremely proud of her and so happy for her! She did get bad news yesterday though. Her uncle is in the hospital in Fargo with an aneurism, so please pray for complete recovery for him.

The rest of us are happy and well. We are still reading Les Miserables in the evenings and can�t help but tease Karl a little about being as twitterpated over Raeanne as Marius is over Cosette. Lesa is enjoying algebra, Greek, art, and drama, and Aron loves to read to us all from his history book and plays for hours everyday in the snow. Paul is keeping busy fixing computers, with Karl�s help. We are so thankful for these happy days!

Blessings to you all,
Donna

Thursday, December 13, 2007 8:46 AM CST
Our visit to the retina specialist in Fargo went well. Paul has an old "Central Serous Choroidopathy" (CSR) which means he has pigment "missing" in his macula causing the blurry vision. It is likely to be stable since the doctor detected no current leaks under the retina. There is a tiny chance his vision could actually improve, but since it is 6 months or more since he noticed the blurry vision, he may just have to get used to it, but we are happy it won't get worse. We are relieved it is NOT macular degeneration, which is what we kept hearing AND they even made us watch a movie about it before all the testing was complete!

Erik has only today and tomorrow left for this round! Then a BIG break! His counts should be great by the time he gets to Montana for Camp Mak-A-Dream and snowboarding! He is handling everything like a champ, and actually just broke the 160 lbs barrier after two years!!!!!! Who gains weight on this chemo???? That is still 20 lbs under his high before transplant in Nov 2005, but he looks and feels great. We buzzed his head finally, he was tired of the increasingly thinning hair.

The great cookie sale is over! ALL the cookies have been sold and hundreds of thousands of dollars raised for hu3F8! Negotiations are underway for a company to develop the antibody.

Also many thanks to those who have donated to Erik's tree for Lunch for Life and most of all thanks for your continued prayers!

Blessings to all!
Donna

Sunday, December 9, 2007 4:28 PM CST
Erik and Lesa are on their way home from the Walz household and had a BLAST going with them to the Third Day concert last night!

You just don't find more wonderful people than Pam and Harold and their four great kids. Nathan just finished treatment and had a low ANC and a truck load of school work to do this weekend, but he was willing to take in Erik and Lesa anyway!

The plan is for Erik to finish this round of chemo this week, get a four week break which includes a trip to Camp Mak-A-Dream in Montana Jan 3-10, and then have two more weeks of chemo and be ready for reevaluation the last week of January with consult on Feb 1. It's okay with me if you start praying NOW for NED...(no evidence of disease).

When he finishes the round in January, it will be his 24th cycle of chemotherapy (his 7th of irino temo), and it means the past year he spent everyday in the clinic for a total of 14 weeks getting IV irino. That doesn't include the clinic time for scans, biopsies, counts, physicals, or hospitalizations for hu14.18-IL2 (and even more clinic visits while on fenretinide in Madison WI).

Really it has been a full time job for Erik, and a lot of it spent feeling pretty lousy. Thankfully he was able to squeeze seven weeks of volunteering at cancer camps (Camp Sunshine in Wisconsin, Maine, and Camp KACE in MN) as well as one weekend retreat for young adults. It has been quite a year!

As I was updating his history above...I realized he has had evidence of disease for all of 2007. Yuck. Let's hope 2008 brings better news of NO disease!!!!!

I am so hopeful that something like the hu3F8 could be the agent that brings about cure for Erik. Long shot, I know....

But I can still hope!

Blessings,
Donna

PS I forgot to mention that we were not able to go last week to Fargo for Paul's special eye test (fluorescein angiogram) because of the snow storm. So we rescheduled for this coming Wednesday.

Brrr it was cold here this morning! 22 below!!!!

Tuesday, December 4, 2007 9:16 AM CST
Update from MOM:

Good morning!

Erik is back in the game. His counts were great (ANC 1200, WBC 2.8, PLT 91 and HGB 10.5) and successfully got day 1 dose yesterday of irino and temo. It is a sad irony how the anxiety mounts in me every day that passes beyond the chemo �due-date� but Erik is overjoyed at a delay. So I felt better yesterday and Erik feels icky! Poor guy! Actually we keep repeating to ourselves how easy this is compared to induction (high-dose) chemo. This is a walk in the park. Now we just need to find something for a long term solution that is NOT chemo.

Karl will be taking Erik in for chemo today and Paul and I are going to Fargo, and it is snowing fairly briskly. Ugh.. Last week Paul had an eye exam that revealed damage to his retina (detaching?), so he is going to have a �fluorescein angiography� test done today. Please pray whatever is going on in his eye they can fix it or at least stop more damage from occurring.

Otherwise life is good. I sure love the snowy days and excuse to stay warm and look at it through the window! Erik and Lesa and Aron started on a huge fort, and want to make an igloo and sleep in it. We have been reading �Les Miserables� (the 600 page version-- not the 1200 page!) aloud as family, and it is great! We are about half-way through, and even though we have to stop and explain quite a bit to Aron (he is 8) he is enjoying the story immensely. We had to review quite a bit of French history to understand Marius� politics. Karl has the dictionary in hand as we read, and won�t let us proceed with fuzzy �in-context� understanding alone. Reading aloud has always been a challenge for Erik though because of his hearing, so he usually �multi-tasks� (with projects on his laptop) during our reading sessions. Too bad we can�t project subtitles�

The past few days I have spent many hours reviewing the ASCO 2007 NB presentations online (called �virtual meetings�) and am fairly discouraged at the lack of progress in treating high-risk NB�specifically the results of the A3973 study that ran from 2000 to 2006. I really would have never imagined that the long-term survival would be somewhat stagnant over the past 17 years, but this is the case. In fact the kids who were diagnosed in 1990-1994 had a slightly better overall survival than those diagnosed between 1995-1999. So like many NB parents, I can�t help but feel a terrific passion and drive to see progress for the kids who are yet to be diagnosed. Just wish I knew the answers. Erik�s last post really well-defines my struggle. I do believe that God is ultimately in control of everything! Absolutely and without question! And I flip-flop regularly between the �faith� world and the �science� world�the balance is difficult for me. It occurred to me just a few days ago, the highest concentration of miracles recorded in the scriptures are in two books, written by a doctor. Hmmmm.

Thanks for your prayers and checking up on Erik! Please continue to pray for him and all our friends who are battling the cancer monster.

Blessings!
Donna

Thursday, November 29, 2007 3:29 AM CST
I've been playing this game lately, called 'The longest journey'. Amazingly artistic for such an old game. It's about a world split in two. They are both the same planet (earth), but one is a technological version, and the other is a magical version. The two worlds coexist in separate dimensions. While the planet may be the same, nothing else is. The residents of both realms are completely different, being raised in different environments. It made me think about real life... how we have two worlds too--the physical realm and the spiritual realm.

The physical realm is everything we can see, touch, what we perceive. It consists of logic, science, everything we know. Our mortal wants and needs. It seems consistent and reliable, that�s why we naturally trust �what we can see with our own eyes�. As confident as we are in our knowledge however, it�s still a tiny island in the vast sea of the unknown. In that unknown lies the other world. The spiritual realm. Everything we can�t see; every doubt, belief, dream, fear, and hope exists there. It�s hidden, but most people admit that there�s more to life than meets the eye. We can�t understand it, so it seems less reliable than science. No matter what our perspective is, both worlds affect us.

Just like in the game, people can get stuck in one or the other. Some prefer the security of things they understand and are content with the limitations of their own knowledge. Others are attracted to the vast possibilities that lie in the unknown, and accept the inconsistency. Before the industrial revolution really kicked off, people focused a lot more on what they couldn't see with their own eyes, and now we are so saturated with our own scientific achievements, we often forget our roots. At the same time however, we have intelligence and wouldn�t it be a waste to throw it away? Isn�t it our destiny to better ourselves? We could consume our whole lives believing something that wasn�t true.

Is technology really so evil? Is faith really so stupid? In a world of atheists and zealots, how do we reach compromise?

I believe the compromise is already there, in our freedom of choice. The only thing we can know for certain, in the myriads of ideologies, religions, cultures, lifestyles, beliefs� is that we could be wrong. My God understands though. I�m pretty sure I�m not the first person diagnosed with cancer suddenly inspired to �figure everything out�, but I realize (being human and all)� that�s probably not going to happen. I believe God is an infinite personal God, Who can be worshiped by anyone in spirit and truth, as long as the heart is sincere. He created both realms, but trying to find the balance between the two is the real �longest journey�.

Monday, November 26, 2007 5:27 PM CST
Low counts, no chemo. Try again next week.

We packed up zofran, oral chemo, lunch, and reading material for me, and Erik had big plans for a long nap in the clinic this afternoon. Instead he spent 2 hours there with port accessed, ready to go, only to learn his ANC is only 682. It has to be 750 to start chemo. Argh. His platelets looked great though at 84 (has to be 75 to start). His hemoglobin is only 10.8, the lowest it has been since last February.

He has already had two weeks off chemo (supposed to be one week). So now he has three weeks off. I am guessing his doctor will lower the dose for the next round, because at our last visit he mentioned he would rather lower the dose to keep Erik on schedule than allow extra time off between chemos.

Soooo, he can play volleyball with us tonight and we'll dig out the paints so he can paint some more masterpieces this week!

Besides worrying about the NB gaining ground (which I remind myself was not an issue last spring when he had such an incredible response to only three rounds, with long breaks included) I was hoping he could get two more rounds in before going to Camp Mak-a-Dream in Montana and be ready for reevaluation (scans and biopsies) in mid-January. Looks like he'll barely get in one round with this delay. I am trusting God knows best and is in control of the timing!!!!

Yesterday we had the MOST wonderful time at Nathan Walz�s End-of-Chemo party!!!! What an awesome celebration!!! It went WAY too fast. We took the scenic route. We drove 2 hours to meet Cherie and pick up Erik (who ate famously at Chez Cherie's and loves her mom's cooking!!!!) and then 2 more hours to Monticello to the party, spent the fastest 3.5 hours ever eating, talking, playing games, swimming, playing volleyball and foosball, and shooting pool. Actually all I did was eat and talk, the rest of the family enjoyed all the amenities! CONGRATULATIONS TO NATHAN (he finished two years of treatment for non-Hodgkins lymphoma, and is graduating from high school next May)!!! Then we had a very quiet and restful 3 hour drive home.

I was blessed to get to know another Walz family better-- I had only briefly met them at Camp Sunshine. Their son Josh was in our teen group and had a cord blood transplant (for leukemia) about 6 months after Erik had his auto stem cell transplant, and they had the same transplant doctor (who we both equally adore). It was amazing to hear more of Josh�s story. I cannot imagine going through 70 days of transplant with four other small boys (one a newborn)! Incredible! What a beautiful couple with a precious family.

Please keep us in your prayers! Talk about perseverance required. I am constantly praying for God to show us the way to make good treatment choices, and I am filled with hope for Erik's complete healing. Please join us in that prayer!

Blessings to you all!
Donna

Saturday, November 24, 2007 1:45 PM CST
I know I apologized for the heavy handed fundraising focus in my last journal entry. But you HAVE to read this update from Band of Parents volunteer Larry Witt to sense the scope of the goals and efforts put forth to raise money for the hu3F8! Below is quoted from Larry Witt:

UPDATE FROM BAND OF PARENTS/COOKIE SALE LARRY WITT:

We are now 1 week into our 3 week Cookie Event and I wanted to provide all of you with an update.

GOAL: 8,000 dozen meaning each FAMILY has a goal to sell at least 100 dozen cookies. Not 5� not 20� but 100. Obviously some will sell more than others, but your goal as part of the BAND is to do everything you can to sell 100 and I assume everyone knows this. We have one purpose and one purpose only as members of the Band of Parents and that is to raise money for HU3F8.

As of 9:40 Saturday Morning
--Dozens Sold: 878 which is 11 percent of our goal
--Dollars Sold: $26,340 (expenses estimated @ $14,000) net = $12,340 plus every dollar sold from this point forward is profit!

The last minute effort and goal is ambitious and at no point did anyone feel it was going to be easy, and for some even harder. I want to share a bit more information and insight with all of you in hopes that you fully understand the amount of support this event has received on your behalf and why it is our responsibility to our kids, our supporters, and to Memorial to sell far more than we have so far. Everything listed below was donated after hearing about what all of us together are doing in an effort to create a new treatment for our children:

--Dough to make 96,000 cookies FREE! I estimate this value to be nearly $50,000. The work involved in adapting Sally Sampson�s recipes was a major investment in time on their part. The supplier makes dough for Whole Foods, and many online cookie companies like Geoff and Drews.
-- Sally Sampson � hours of personal time supporting this effort by donating her recipes, connecting us with the dough maker, her publisher and the professional photographer who took the cookie pictures. She is in the midst of a publicity tour for �Cookies,� and talks about our cookie event during interviews with media whenever she can.
-- Wiley Publishing � agreed to the use of trademarked recipes, and has allowed Sally to co-promote the event while promoting her book on various radio shows including the Martha Stewart radio show. Sally has a child who spent several years in and out of hospitals with a disorder even more rare than NB and because of this she knows all too well the challenges we face and has given of herself to help us make a difference in our child�s lives since there is nothing she can do to further development of a treatment for her daughter. She feels we have been given hope and she is doing all she can to support us.
--Carl Tremblay � Professional Photographer considered the best food photographer in the Boston market. He dropped everything and did a photo shoot when approached by Sally after it was realized that we needed additional photography for the online cookie store.
--Uline � Wants no credit for their support but they donated all of the white gift boxes the cookies will be packed in and supplied various other packaging materials like shredded craft paper at their cost. When they heard what a bunch of motivated parents are doing, their exact words were, �we�ll do anything to help you succeed and are inspired by your efforts.�
--The Container Store � was willing to donate all of the packaging materials but we had already secured what we needed. They then decided to send a communication to their NY area stores encouraging them to donate their time to help bake cookies.
--Anonymous donor hears about what this �Band of Parents� was doing and then went out and bought a commercial bag sealer and had it shipped overnight to us for use when packing the cookies in their cellophane sleeves. She wanted to make sure we were successful and delivered a good product.
--Cold Storage � Donated due to the efforts of Shirley Staples who shook down local storage facilities near the baking site so we would have a place to store the 3 � pallets of dough for the 8,000 dozen cookies we intended to bake. The owner of this facility is also allowing us to park a freezer truck on his secure lot and use his electrical outlets needed to plug in its 440amp cooling system.
--200 PLUS VOLUNTEERS � already signed up to bake cookies for us. Many have given up time at work, taken personal or vacation days to do so and all because they are inspired by what a �Band of Parents� has set out to do.
--Packaging Company � Donated all of the shipping cartons needed to ship the cookies orders via UPS as well as the packing tape and the bubble wrap to fill the void in the cartons.
--Michael Levine President and Founder of Real Stores - a startup web store that donated dozens of hours of their personal time creating the online store for us. The night the site went live, Michael was up until 4:00am making sure it was ready to go. Michael has children and this is his way of supporting our efforts. I would hate to see his weeks of effort building a store for us not be maximized by falling short of our goal.
--UPS � after a second round of negotiating, they provided us with the best ground rates they offer. The new negotiated cost is what allowed us to drop shipping costs to $8.50 from $11.00, almost a 23�eduction. Plus they are working closely with us this week to plan the logistics of handling the cookie orders and readying them for shipping.
--NY Printer � accepted the printing job for the insert card (attached PDF) with a very short lead time and came in at half the cost of two other bids saving us nearly $3,000. This offer was only provided when they heard about what we planned to do.
--Credit Card Processing Company � provided us with extremely low processing costs to the point where they needed approval from an SVP in the company. Initially the percentage to be taken for processing each CC transaction was going to be nearly double the percent we are paying today. You know the story �provided to us after hearing about the amount of work and effort a Band of Parents was putting forth to help fund a treatment to help save their children from cancer.

I could go on but hopefully you realize this event has touched hundreds of people and each is doing their part to make our efforts successful. All we need to do is sell a few cookies!

One other very important element of this fundraiser is Memorial Sloan-Kettering Cancer Center. We have managed to convince MSKCC to move forward with hu3f8 project and they are doing so right now. I was told last week that Dr. Cheung has already started to meet with outside companies who will be instrumental in the creation of the new antibody. The ball is in our court to raise the funds needed to make it happen. Falling far short of our goal could slow down their efforts. The reality is we are paying for the HU3F8 project and though money has been raised by the Loneliest Road and a few other events, it is no where near where we need to be.

I can appreciate how it may be difficult for some to go out and try to find people to buy cookies, but I also believe that each member of the Band has a way to reach their goal regardless of what they may be facing or how few contacts they may have. Each has cried many nights feeling helpless as this terrible disease attempts to take our child. We have all been powerless �..until now. We have been given a chance to make something happen. We are no longer powerless. Dr. Cheung has empowered us and given us yet another gift. Together we have the ability to create what very well may be the best treatment option any of our kids have been provided so far. I know some may not benefit from this future treatment due to the amount of time it may take to bring to fruition, but I can only hope that they or someone close to them will feel inspired to help us save as many children as we can in the near future.

The sooner we can raise the money needed, the sooner the project will get off the ground and the faster it will be completed. So far we have talked a good game and accomplished a great deal by building a legitimate foundation. In the end it may be that we are parents of kids with cancer who have bitten off more than we can handle. Maybe raising $2 million dollars and the extra effort required is too much for some to deal with? Maybe everyone needs to look to Alec and Chinh for inspiration (note from Donna--these two Band of Parents Dads lost their tiny children shortly after the Band was formed...): Two fathers who gave it all they had regardless of how bumpy the road they were traveling. They are two parents motivated out of sheer love and a need to fight for the life of their child.

We would not have worked as hard on this as we have if it was our personal contribution. To be very honest I would have just written a check and used the time left over to spend with our son. We sacrificed an incredible amount of our time as did countless volunteers to put this event together and all we ask is that you now do your best to meet your goal. If you feel you have done all you can, and exhausted every potential resource to sell the cookies that will in turn provide the hope you so desperately seek for your child, then that is all we can ask.

Our kids have struggled through months if not years of pain and anguish, and dealt with far more than any one of us parents. Sure we have felt the sadness, pity, and absolute fear but nothing when compared to what each of them has endured as they fight for their lives. So now we have a chance to provide them with a new hope and a chance for a future.

All the flowers of tomorrow are in the seeds of today........
Thank you,
Larry Witt
Volunteer, Band of Parents

Friday, November 23, 2007 11:36 AM CST
What a blessing!

It seems like such a long time since we have been able to celebrate Thanksgiving together with family. Last year was such a low for us--Erik was in the hospital and we were still reeling from the news of his second relapse and facing treatment again. He was heartbroken and devastated. I made his FAVORITE food, turkey, stuffing and gravy, and brought it with me so he could enjoy as much as he wanted while in the hospital. The charge nurse Jimbo warned me not to put anything in the refrigerator in the family lounge, it would get stolen. He was right, it was stolen! (They left the stuffing and gravy, so Erik did get that at least!)

The high point of that week, and something we will NEVER forget, was a visit from Steve and Libby on Thanksgiving. Steve and Erik were both NDSU students in Fargo ND, and both diagnosed with cancer in the spring of 2005. They were both hospitalized at the U during Thanksgiving 2005�Steve was undergoing chemo and still recovering from his amputation for osteosarcoma, and Erik was in transplant.

Last year Steve and Libby left their families on Thanksgiving to spend hours and hours with Erik, and Libby taught us how to play cribbage. We got to tour the new high tech rooms on 5B�these rooms were so bittersweet for Steve and Libby to see since Steve had spent 5 months at one time in traction on 5B getting chemo and then surgery losing his leg at the hip, then lots more stays for chemo, more surgery when he fell and injured his stump�Steve then finally got to start using his prosthesis 1.5 years after losing his leg. He and Libby both graduated from college and got married this past year! Health and happiness to Steve and Libby always!

It makes me cry to think of how much it meant to us that Steve and Libby would come to see Erik on Thanksgiving!!!!!

So this year I couldn�t help but reflect on all this, and especially think of the families spending this Thanksgiving in the hospital.

We were so blessed to have Cherie join us at my sister�s house where 20 of us gathered to give thanks for God�s grace. It was also my nephew�s 21st birthday. Erik is going to Cherie�s house today and he�ll join us on Sunday when we go to a special END-OF-CHEMO Celebration for Nathan Walz! Nathan was diagnosed right at Thanksgiving time two years ago with non-Hodgkin�s lymphoma, and is a senior in high school. Congratulations to Nathan! This family has truly amazed me how they are always caring for others in this pediatric cancer world, and Nathan especially has shown such a phenomenal attitude through this rotten deal he has endured.

I could never list everything I am thankful for! Through so much heartache have come such depths of joy.

Lastly, great news! Erik will be going to a Young Adult Conference in Montana in January 3-10! This camp is one of the very few places that offer something for young adults with cancer. His really wants to snowboard while he is there (while I am inclined to insist he obey his doc!), so please pray that his bones are strong and platelets are HIGH!

It is important to have something on his calendar other than chemo this winter!

Depending on the timing of the chemo, he�ll go back to the U for scans and biopsy again after the camp.

Lastly, I know this page is a bit obnoxious and littered with fundraising stuff! Please forgive me if it is offensive and a little-over-the-top. I am not usually so forward with all this! I sure wish there was another way to get the word out, especially to corporate donors! Thank you for putting up with this particular crazed parent.

But I do believe this humanized antibody really could make the difference for many kids with neuroblastoma. Many cancer parents face the same great difficulty with the fact these are all �orphan� diseases (definition of an orphan or rare disease is one that affects under 200,000 people). So the competition is keen for money for research for some of these hard-to-cure rare diseases, such as high-risk NB (which only affects 350 kids a year in the US, but kills the majority of them).

The nifurtimox trial is also important to fund. Right now there is very little effective treatment to offer kids with progressing disease, and we have seen many amazing responses to nifurtimox! So I am anxious to see that trial funded as well. And CNCF/Lunch for Life funds many important NB research projects as well!

So bear with me! Please continue to check up on Erik, ignore all the begging for money, and if you happen to have an inside chum in the Gates Foundation or some other great philanthropist�let me know!!!!!

Blessings to you all!
Donna

Saturday, November 17, 2007 2:11 PM CST
MORE on Erik�s last scans and visit to oncologist:

September�s PET/CT SCAN report (after progression on fenretinide) said:

�There is diffuse metastatic disease throughout the skeleton which is increased in distribution since the prior study (7/31). There is diffuse involvement of the thoracic and lumbar spine and sacrum, previously affecting only scattered levels. New focus of hypermetabolic activity in the right humeral head measures maximal SUV of 6.9.

There is increased activity in the T3 vertebral lesion with maximal SUV of 8.3, previously 5.2. T7 vertebral lesion is increased hypermetabolic activity with maximal SUV of 9.2, previously 5.5. Lesion in the superior aspect of the sacrum is increased in activity with maximal SUV of 7.6 previously 4.0.�

Last week�s PET/CT said:

�There is foci of hypermetabolic activity in the following vertebral bodies:
-L2, max SUV of 3.2
-C2, max SUV of 2.4
-Head of left femur, max SUV of 4.2. It is decreased in severity compared to previous examination.
Few other vertebra show mild increased FDG uptake with SUV less than 2.5.

Lesion in superior aspect of sacrum shows max SUV of 2.4. It is decreased compared to previous examination when max SUV was 7.6.

Compared to previous examination there is significant improvement in the vertebral lesions.�

Translated, this means his entire skeleton was showing disease in end of September (in marrow and bone) on a SUV scale of 7-9 and now he only appears to have a couple lesions left (surface of the bone) and greatly reduced marrow involvement with SUVs now in the range of 2 to 3 with one spot in femur (SUV 4).

Pretty amazing huh?

We talked again about 3F8. Erik�s doctor saw Dr Kushner�s presentation at the COG meeting about 3F8 and saw more encouraging data than he had seen previously. He thinks it is a very good treatment. But we are all concerned about the fact Erik would have to undergo high-dose chemo before 3F8 to prevent HAMA (human anti-mouse antibody). This could be dangerous for Erik for a couple reasons. He has had two transplants, and a brush with VOD in the last transplant. His counts may not recover, and that would mean using his last bags of stem cells. The other bad news about doing that is Erik�s stem cells were collected after relatively low-dose cyclophosphamide (1250 mg/m2 over 5 days, as opposed to 4200 mg/m2 over 2 days), which means he would likely HAMA quickly with the recovery of THOSE cells. See Preparative Regimens for Antibody-Based Immunotherapy in Resistant Neuroblastoma if you want to know more about the high-dose chemo required before 3F8, specifically in relapsed NB kids.

From this article: �These patients received a median of three cycles of 3F8 (range, 1�8) over a median period of 4.5 months (range, 1�12 months) without developing persistent human antimouse antibody, consistent with the desired immunosuppressive effect of high-dose cyclophosphamide, except in one patient who was treated with CTV followed by infusion of autologous stem cells that had been collected after relatively low-dose chemotherapy.�

Now the humanized 3F8 would be a grand idea, and Erik even said to his doctor he would �definitely do those antibodies� because he agrees the current gamble of undergoing high-dose chemo and still acquiring HAMA is too risky.

So, the plan is to do two more rounds of this chemo and scan/biopsy again (likely January). Then, who knows? In the meantime, we certainly hope that the various fundraisers for hu3F8 are HUGELY successful�and if anyone knows a source of millions available to donate to a very good charity, please let me know!!!!!

We are all so happy about Erik�s response, but I still feel badly for him to have to spend so much time feeling sick. Four of the past six weeks he spent every day in the clinic for 3-4 hours. We do have to be thankful for how well he is tolerating this. I asked about spacing out the chemo more so he could do some fun things and possibly travel between chemo, and his doctor is very hesitant to space the chemo out on purpose. If his counts start to come up too slowly, he would rather lower the dose so the NB doesn�t get the chance to get ahead. And doctor is NOT giving him an okay for any snow boarding this winter�Erik wants so badly to get back on the slopes!!!!

So Erik is trying to get more done on web design. He is learning so much! He also is working on chemo-related T-shirt designs for more fundraisers for hu3F8.

Paul and I had such a nice and relaxing time going to the U for Erik�s scans and consultation. He finally got to meet our beloved Dr and NP and he was impressed with the 3D visualization (composite PET/CT image) since he did his thesis on a rudimentary form of volumetric rendering for his MS in computer engineering a couple decades ago! Last time Paul was there was two years ago, before Erik�s transplant. He savored every fresh bagel, and spent a lot of time trying to decide which ethnic restaurant to eat at next. I feel like I went on a cruise and ate too much! We enjoyed leisurely walking around furniture stores since there was no hospital business on Wednesday.

Erik of course spent every minute with the lovely Cherie (that she could spare between classes, tests, and preparing for the pharmD admissions interview)! She and I worked on physics one night (harmonic oscillations in springs �ugh!--and Bernoulli�s pressure equation�not so bad). Hopefully she did great on her physics test and we are really praying hard for her acceptance into the pharmD program (she had her interview yesterday). She�ll find out next month. Out of vast numbers of applicants, they interview 350 and accept 150 each year. Of course since she is SO amazing, we think they should pick her!

Kids did great while we were gone. Karl handled one computer service call on his own, and consulted Paul on a couple others. The kids were happy with Karl�s care (Lesa and Aron are very good at tattling if he is too hard on them!) Karl even had them working on schoolwork!

So now we relax and look forward to Thanksgiving at my sister�s house, which falls on my nephew�s birthday. Since Erik was inpatient in hospital the last TWO Thanksgivings, this is going to be so nice!!!!

Many blessings to you all!!!!!!
Donna

Oh yeah, we totally forgot to discuss antidepressants! Erik says he is good for now!

Wednesday, November 14, 2007 9:59 PM CST
GREAT NEWS DEAR PRAYER WARRIORS!!!!

Erik's NP called a few hours ago VERY excited to report good news! Erik's scans (PET/CT yesterday) are DRAMATICALLY improved!!!!!!

So good in fact, his doctor decided the biopsy is unnecessary tomorrow!

We are all ecstatic and praising God!!!!!!!!

We see Erik's NP and oncologist tomorrow for the full version of the results, but the quick version is:

Last scans in Sept (after progressing on fenretinide) showed the entire skeletal system involved, with SUV (brightness values for comparing one scan to another) of 7-9 range. Remember he was also having pain in his spine and hips.

Now he has three spots (two in spine and one in femur) and the highest SUV is 2.

Can you believe this?????????? Isn't God incredibly good?????

AND to top it off, his counts are incredible. Last spring he took 4 weeks to recover after two rounds of irino/temo. Now he has completed two rounds again, and his counts are already up from last week! So he could start chemo again next week, but since it is Thanksgiving, I think it is appropriate to give Erik a break to THANK GOD.

Blessings to all!!!!

THANK YOU FOR YOUR PRAYERS!!!!!

Praising God!
Donna

PS Paul was able to come as well, our best ever hospital visit!!!!!!!!! YAY GOD!!

Saturday, November 10, 2007 12:15 AM CST
UPDATE from MOM

One year ago today, we found out Erik relapsed for the second time. He had just visited the new state university and signed up for classes to finish his college degree (he was switching from computer engineering to IT). It was a terrible blow. He had to quit his job. He then spent Thanksgiving in the hospital getting hu14.18-IL2 antibody treatment (which didn't work). He had spent the previous Thanksgiving in the hospital getting a stem cell transplant.

Sixteen years ago he was limping around and running a low grade fever...a few weeks later he was in excruciating pain, and we finally found out why.

Needless to say we are excited about celebrating Thanksgiving this year with family! It is Erik's favorite holiday.

The past year has been really wonderful in spite of all Erik has endured. He had two rounds of antibodies last winter (did not work), then three rounds of chemo last spring (worked very well), then quit chemo. He had a perfect summer, and miraculously did not progress much during 4 months off chemo. Then he tried the new formulation of fenretinide, and that was a bust. Lots of progression (tumor growth) and pain in spine and hip. He has now finished two rounds of chemo (irino/temo) and the pain is gone, thank God.

Follow up to last post:

After bugging Erik the last couple days �Write something! Your public awaits! Don�t leave them hanging!� (chuckle and reference to Erik�s very first post on May 27, 2005 �I AM FINALLY POPULAR!!!�) and not content to wait, I will give you the second hand story of how he is doing, as I see it, today.

So from the last post sounds like he is in the depths of despair, right? Oy vey, he is such a drama queen! I�ll admit, it IS one of his more lovable qualities! It is true, he was pretty down the night we talked. I think we all agree that is allowed. But in truth he was on Cloud Nine when he began reading all the You�re-still-a-Hero posts! In fact he tickled me greatly when he actually did a search in his guestbook entries on the word �inspiring� and �inspiration� and counted the references! Crack me up! He said �Hey I have been described 24 times an �inspiration� and once an �inspirtation�� grin�

What a hoot.

Proverbs (16:24) puts it best: �Pleasant words are a honeycomb, sweet to the soul and healing to the bones.�

Thanks to all of you who bless Erik with pleasant words! There is healing indeed.

So Erik is really doing well, and sooooooo happy he had his last day of chemo yesterday for this loooooong second round (ie he has spent four of the past five weeks in the clinic getting IV chemo). He really perked up last night just knowing he has a break coming. His counts are slowly falling through both of the last rounds, so he may get more than a week break. Last spring it took a four-week break (instead of one week) after two rounds for his platelets to rebound to the bare minimum of 75 to start the third round. (Monday his counts were: WBC 1.9, ANC 800, PLT 67, and HGB 11.2). I expect next week all counts will be lower still. Pray he keeps his perfect record of no transfusions and no fevers!

Two weeks of chemo every day seems like forever! He hasn�t felt terribly nauseous, the drug combo (just benadryl and zofran, we gave up on aloxi) to fight nausea (and Imodium and cefixime for diarrhea) seem to be working. But he is very tired. He gets through it by sleeping, with periodic interruptions by me waking him up to eat eat eat. He is up to 155 pounds!!!!!!!! Miracle!!! It took him a whole year to go from 140 pounds to 150 pounds a year to two years after his second transplant (he was 180 when he went into transplant Nov 2005 at 6�2). And he could drop 5 pounds in a couple days at any given setback. So I am THRILLED he is gaining weight on this chemo.

The past two weeks were also fairly consuming in trying to get his temozolomide and Celebrex approved all over again, since his drug plan switched when he was put on Medicare (we didn�t have any idea this was coming�it is because he has been on disability two years). Just took a gazillion phone calls back and forth, to medicare, Aetna, medical assistance, the pharmacy, the AWESOME NP who does not get paid NEARLY enough for all she does, and time spent finding abstracts supporting the idea that Celebrex has anti-tumor effect with chemo against neuroblastoma. Whew. Both finally approved as of yesterday, but not before I was starting to panic. The Celebrex is only a couple hundred dollars a month, but the temo is $3500 for two weeks (that�s only 20 pills!)�yikes!

Next up: PET/CT scan next Tuesday, and bone marrow biopsy on Thursday. We�ll see his doctor for consult on Thursday after the biopsy, so we�ll only have results from scans at that time.

If scans are improved (which we are thoroughly praying and expecting to hear since his pain in his spine and hip have improved so much) his doctor will very likely continue this chemo (irino IV 2 weeks/temo oral 1 week), but we�ll have a chance to discuss other options as well.

I am hoping we can coax Paul to come with us, since he has never even met Erik�s doctor! But is it hard with work and leaving the other kids. This seems so strange to me, even though we have been doing this for SUCH a long time, how families must split the duties, so one works and holds down the fort and plays single parent while the other has to be the researcher, medical guru, traveler, and caretaker. I am REALLY amazed (and more than a little jealous) that some couples with a host of tiny children seem to share both jobs extremely well, much better than we do. How is that possible, I wonder?

Paul will be the first to admit he has no aptitude for medical jargon. It just a lot of new and unwanted vocabulary. He is a computer genius and can speak in that foreign language all day, so I have to understand-- to each his own. But it would be nice to at least have a conversation about the pros and cons of Erik�s treatment choices once in a while! We have been married 28 years, and first encountered neuroblastoma 16 years ago. I was 31 and Paul was 38. Paul just takes it all in stride, works, and keeps the home fires burning. When I come home the house is always much cleaner than when I left, and the other three kids are well. House projects get done, and he even teaches Lesa and Aron�so nice since they are homeschooled! I wrestle constantly with the difficulties and guilt that go with trying to do everything, and feeling some things are just not going to be done well. But I see them thrive and learn and grow through all this, so I guess there is much more going on than what I can write in a lesson plan, right? I am so thankful for that. So now explain how is it possible some cancer parents are single moms or dads?????

I have so much to be thankful for!!!!

Big picture? There is no big picture, at least one that we can know completely, now. Just this day, today, for which we are so thankful!!!!! People often ask me �When will he be done with this chemo?� �What is the roadmap for treatment?� �When does his treatment end?�

Hmmmm, all my NB friends, especially the relapsed NB parents know FULL well how terrible the answer is to that question�. No end to treatment? Well, we do all groan for the redemption of our bodies (Rom 8:23), so yes, there will be an end, eventually. I am confident in that. Does God work miracles? Yes! Amen! There are miracles. Are we hopeful? YES!!!! We were told six weeks after Erik�s first diagnosis in 1991 he would not survive. I have seen miracles, even with relapsed NB. But the hard cold statistics are about as gloomy as they come. So let�s not go there. Let�s keep praying for miracles and more good days and for more opportunities for Erik to serve others and pour out his heart in encouraging his fellow sufferers. Really it is a Beautiful Life. Erik will tell you that!

I marvel at the miracle that Erik is at this moment in time. At the same time I deeply and continuously grieve at the loss of tiny innocent children who die so cruelly. This creates a great chasm of range of emotions in me. Ecstatic joy that Erik is here now, and horror and grief at the suffering and death of small children, everyday, from this disease in this country alone. Can I ignore either one?

I remind myself we all have a terminal disease (mortality) and I have hope and firm belief there is a reason and purpose for all of this, even if I do not have the faintest idea what the reason or purpose is right now. This must seem so sick to those who believe it is all due to random chaos, so as to not have a Supreme Being to rail at and blame. But I have to humbly accept that His ways are above my ways, His thoughts are so far above my thoughts, and He knows more about suffering than I do.

Hebrews 2:9-15

�But we see Jesus, who was made a little lower than the angels, now crowned with glory and honor because he suffered death, so that by the grace of God he might taste death for everyone. In bringing many sons to glory, it was fitting that God, for whom and through whom everything exists, should make the author of their salvation perfect through suffering.

Both the one who makes men holy and those who are made holy are of the same family. So Jesus is not ashamed to call them brothers. He says, "I will declare your name to my brothers; in the presence of the congregation I will sing your praises." And again, "I will put my trust in him." And again he says, "Here am I, and the children God has given me."

Since the children have flesh and blood, he too shared in their humanity so that by his death he might destroy him who holds the power of death--that is, the devil-- and free those who all their lives were held in slavery by their fear of death.�

Guess that about wraps it up for today!

Thank you for caring for Erik and for all of us!!!!!

Blessings to you all,
Donna

Tuesday, November 6, 2007 2:29 AM CST
It�s been a while since I last shared my thoughts online� but then not much came up recently that I considered really thought provoking. Things have been going relatively smooth� I haven�t been able to get any work done, but chemo is starting to feel like clockwork and I get a lot of rest. I don�t like to complain because I know it can be a lot worse, but sometimes the �chemo feel� gets to me. It feels like there�s tons of toxic chemicals swimming around in my bloodstream all the time� giving me a hot, sticky, supersaturated, heady sensation and a bad taste in my mouth to go with it. It also makes me more edgy. Little things that wouldn�t normally bother me, I find I have a lot less patience for. I like to think I can handle it all� but tonight when I was discussing all these things with my mom, she suggested anti-depressants.

First of all, I hate drugs. I hate to think of all these different chemicals floating around, interacting in my body. It�s disturbing to me. I don�t like the way they make me feel. Even the nausea medicine makes me feel weird, so I avoid it as much as I can. Second, I hate the very name �antidepressant�. You don�t take an anticongestant for a headache. To me, the name implies exactly what I�m trying to solve. Deciding to take this stuff would make me feel that I�m somehow depressed all the time, or I�m not strong enough to deal with all this. I think normally I handle it all very well and that�s important to me, because trying to be an inspiration to other kids with cancer is one of the few benefits I�ve found from this experience.

The other reason I feel I need to be strong all the time is that� I usually feel I have to be my own source of strength. I have my inspirations, and people who I can talk to� but I�ve never had a real mentor in my life that I could depend on. I found out very fast that there�s a lot of responsibility just being an adult, so I kind of became my own leader. Besides that fact, I prefer helping others than asking for help anyways. It gives me a sense of fulfillment in my life that I can�t get from�for instance�a job or a house or independence, because those are physically unobtainable to me at this point.

There may be a point that I need to accept some help, however. I�m very aware that antidepressants are usually just another part of the treatment. I�m sure my mother wishes she could take some once in a while! It could even be foolish to resist if I really do need them. Sometimes I just wish I could stay at Camp Sunshine forever because there, I don�t have any time to focus on myself. When I�m in full gear, none of this even comes to mind� that is until I get worn out.

I guess my question is: if I do start taking antidepressants, am I admitting the cancer is getting to me? Will I still be that inspiration for others?
~Erik

Sunday, November 4, 2007 3:34 PM CST
Last night was crazy! Most of you have heard of Apples to Apples, right? If you haven�t, click on the link to the wiki page. It does a lot better job of describing the game than I would. Anyways, last night was the funniest moment in Apples to Apples for me so far...

We had a few tough decisions, but Karl ended up with the hardest one yet. His card was �Delightful�, and the options he was presented with were: The Ocean, Genetic Engineering, Sharks, Japanese, Women, and Handguns. If you know Karl at all, you know how easily all of these matched his description of delightful. When he still couldn�t decide, he tried to find ways to pick them all� and we eventually came up with genetically engineered Japanese shark-women wielding guns on the beach. I said it sounded like next summer�s action blockbuster. Karl said they could name the film, �Delightful�. ;)

Japanese eventually won though.

Other than that, I�ve been finally feeling ok again. Most of my �chemo week� is spent sleeping at the clinic, sleeping on the couch, and then sleeping in my bed. All the rest seems to be helping, and I have a good appetite too! Just nice to know I�m not losing any more weight.

Thanks to everyone who signed my guestbook�and to everybody that was at camp sunshine last month, it was great hanging out with you guys!
~Erik

Tuesday, October 30, 2007 7:49 PM CDT
Dear Friends of Erik,

All is well in Ludwinski-Land!

Erik got back safe and sound from Planet Cancer late Sunday night, and stayed with a friend Sunday night so I could pick him up at the U of MN after his counts were done at 10 am Monday morning (WBC 2.9; HGB 11.6; PLT 151; ANC 1000). We hustled back to Park Rapids (4 hour drive one-way) so he could start round 2 of chemo (irino temo) at 2 pm.

He got home around 5 pm and slept from 5 pm to 10 am the next morning! I think the 17 hour sleep did him some good. He looked and felt pretty darn good this morning. He had chemo again this afternoon and is busy catching up with Facebook people, as well and brainstorming web development strategies. He doesn�t feel too nauseous, and ate a nice steak dinner. His left hip was causing him pain after Camp Sunshine and he took oxycodone Sunday night, but seems to be better today. He has no pain in spine or hips.

That�s my boy!

He had a BLAST at Planet Cancer (retreat for 18-25 year olds), held at Peaceable Kingdom in Temple, TX. There were only two other guys (Mike and Omar) and five girls. They got some GREAT T-shirts, �I�ve done drugs Keith Richards never heard of� among others�

I wish it was a tad longer than 48 hours�but it was just as well...he could not have packed in much more his week off of chemo!

Back to the fight!
Please keep praying friends!!!

He will have scans and biopsy again the week of Nov 13. Please pray for healing!

Blessings to you all!

Love,
Donna

Saturday, October 27, 2007 12:58 AM CDT
CAMP SUNSHINE OCTOBER 21-26 2007

Update from MOM:

Wow, what a week. It is so hard to put into words what this week means to all of us. It is frustrating to not be able to articulate all it means�the depth and importance of the experience. I try so hard to put it in a nutshell for those who happily ask �How was Camp?� when we get home�

But how can I ever say it all?

Most of all, this experience means EVERYTHING to Erik. It is hard for his friends here to understand how important this is to him! It is NOT just a typical volunteer experience where you feel good for putting yourself out of your comfort zone a little to help someone �less fortunate��.

It is far more than that. This is his world, and he connects with EVERYONE in such a powerful way. Much more than I can ever understand. I certainly understand how the parents feel, but I cannot imagine being a teen and battling cancer, or being worried sick for a sibling�.yet he really DOES understand and truly cares more about each one than anything else! He constantly made the rounds to make sure the new kids were included in every way and the returning kids were not tempted to form a clique, and he was incredibly successful with that goal! He was extremely conscientious about every detail. It was amazing for me to watch him as lead counselor in action, and to serve as his helper. He was pretty funny�he chewed me out a couple times for being �delayed� to group time because I was talking to other parents (can you imagine me doing that? Heh heh)

I am so proud of him!

Why else is this camp such a big deal? Most of us only have cyber connections with other cancer families. We do not EVER have the luxury of eating a meal or sitting by a pool and discussing similar experiences with other families. Many young people, especially the tween and teen set, NEVER get to discuss anything with others with similar experiences. You really feel alone, even at the hospital. The medical professionals are so bound by HIPPA we cannot be introduced to each other. So most of us feel like were are going it alone. Some parents can find other parents to talk to at the RMD house or family rooms in the hospital, but the patients are pretty well locked up alone! And the clinic setting is even harder, too rushed, and usually there are few ped patients when we are sitting around the clinic at the U of MN. It was different at Dana-Farber. There were always a large number of repeat families on our clinic days (we spent 70 days in the clinic in 1992, plus 132 days inpatient), so there were ample opportunities to keep up with other families. And that was all before internet!

This feeling of being alone applies also for the siblings. Many times they are left at home to continue on with school as if everything is normal. So to have siblings hang out with other siblings who have cancer is a truly unique experience!

Camp always feels too fast, I wish we could have had another day! But I am sure no matter how long it was, I would always wish for another day. So I should be very thankful. The weekend NB conference feels lightening fast, so I should not complain!

This time there were several families with neuroblastoma. I tried to catch up with them all, but there was at least one family I did not get to talk to. I also tried to make the rounds to meet all the teen parents. Some really struck me as truly amazing people, and I am so happy I met them! One young man in our group had the same transplant doctor as Erik, and this precipitated an interesting conversation among the cancer teens about bone marrow biopsies and how much they all love propofol! It was pretty amusing to hear them tell their funny �drugged� stories!!! All of our teens were incredible kids, and I enjoyed every minute with them!!!!! They really bonded, which is SO heartening to see.

There were 34 families at camp, 111 kids, and 42 volunteers (a few additional volunteers popped in for a day or two). We started out with 21 teens on our list, but dropped to 15, and had 4 volunteers with the teens. After a few days I realized the only ones in that group actually CURRENTLY on chemo were two of the volunteers! Erik and Nathan!

This is where I am completely amazed. As a perfectly healthy volunteer (only disadvantaged a tad by age I suppose, at 47!) I was exhausted by the pace and lack of sleep�so how do kids like Erik and Nathan do it???? I don�t think Erik sat down more than a few minutes each day, ate half the time standing up (when he actually ate), running constantly during break times, sleeping less than 6 hours a night (that was his fault!!!) and that was immediately following two weeks of chemo and sleeping almost round the clock! I don�t know how he does it! He did say his hip was hurting again, and I hope it was just from standing and walking, running, dancing, (and moshing!) after so much laying around for two weeks during chemo.

He was pretty comatose for the three hour drive to the airport yesterday! I assume he made it to Austin. I promised I would NOT call him unless it was an emergency (and that would not include checking to see if he is eating, sleeping, or taking his meds). So I really hope there are at least a few others at the retreat actually currently on treatment who might want to hang back a little and rest now and then!

So, on the way home (6.5 hours) Aron was saying how much he missed Karl (because Karl and Paul stayed home to work).

Then he said �I like having Erik for a brother. He�s so much fun. And he�s famous.�

Well, I could go on indefinitely about the week of camp. They shot a promotional video during the week and interviewed Erik. I can�t wait to see it! It was right after the pajama breakfast and the sleepover night WHICH WAS SO MUCH FUN!!! I wish we could do TWO sleepover nights, it was a BLAST!!!!! We had a campfire and a Guitar Hero tournament, played Four on a Couch, Valley of the Green Glass Doors, did facials�on a couple boys!�and of course, Mafia.

Anyway he was pretty tired. Should be interesting!!!

Please pray for Tyler. He really stole my heart. Erik is crazy about him. The disease in his marrow must be causing his counts to fall, or his marrow is failing, and he has no stem cells left from previous harvests. He progressed on chemo last spring and summer, and progressed on ABT-751. So his mom Dawn was given the worst possible news when the Dr said there were no more options for him, right before camp. She is struggling with this because Tyler does not want to give up. Tyler�s team is checking into other options, and I am praying desperately that perhaps they could get nifurtimox off-study, or possibly find something at St Jude�s he is eligible for�.it is so hard when eligibility depends on counts in a situation like this. He came to camp with only 16K platelets, and assumed to be falling still. He was very sleepy at times from the morphine and methadone, but delightfully alert and conversational at other times. What a beautiful child. Please pray for this sweet boy.

Blessings to you all,
Donna

Friday, October 19, 2007 11:53 AM CDT
Quick update from Mom:

PRAISE GOD! Erik is definitely improving in the pain department. He has had no pain meds for several days and he is reporting no pain. (But keep in mind the pain tolerance of this kid is very high�same kid who broke his wrist and we figured it out a year later�and has never even taken one Tylenol after a bone marrow biopsy!)

Nevertheless I am GREATLY encouraged. And more good news: after hanging out at the pharmacy for most of the week, pestering the pharmacist, talking to a sweet NP at the U of MN, all trying to get the Celebrex approved, he started it last night! Yes!!!

This is why I am excited he is on it (although I am disappointed he had to wait until the end of this cycle to start, argh) the idea is that he get it WITH the irinotecan for the synergistic effect. This is an excerpt from the mouse study that helped MA decide to approve it (pray with me he has no allergic reaction since there is a chance�it has a sulfonamide functional group and he is allergic to sulfa drugs):

Clin Cancer Res. 2007 Feb 1;13(3):1036-44. Celecoxib prevents neuroblastoma tumor development and potentiates the effect of chemotherapeutic drugs in vitro and in vivo.
Childhood Cancer Research Unit, Department of Woman and Child Health, Karolinska Institutet, Stockholm, Sweden.
PURPOSE: Neuroblastoma is the most common and deadly solid tumor of childhood. We hypothesized that the cyclooxygenase-2-specific inhibitor celecoxib could enhance the cytotoxic effect of chemotherapeutic drugs currently used in neuroblastoma treatment. RESULTS: Celecoxib induced a synergistic or an additive cytotoxic effect in combination with doxorubicin, etoposide, irinotecan or vincristine in vitro. In vivo, treatment with celecoxib in combination with irinotecan or doxorubicin induced a significant growth inhibition of established neuroblastoma tumors. CONCLUSIONS: Celecoxib potentiates the antitumor effect of chemotherapeutic drugs currently used in neuroblastoma treatment, which argues for clinical trials combining these drugs. Celecoxib could also be a potential drug for treatment of minimal residual disease.
PMID: 17289900 [PubMed - indexed for MEDLINE]

**

So here we go! We are SO excited for Camp Sunshine!!! Erik will be lead counselor of 21 teens with his trusty helpers-- me and NATHAN WALZ!!! Please keep Nathan in your prayers as he deals with constant pain from the AVN (bone deterioration) from his treatment for non-hodgkins lymphoma. He is a high school senior this year AND a sports nut, so this is very hard!

Lesa and Aron are so excited to go! Aron has been pestering me all morning to �pack me!� Too bad Paul and Karl have to stay home and work and take care the mangy muts we got last spring (note the change of tone�one of them has just cost us $200 at the vet! UGH!)

Today is the last day of irinotecan for this round, he has felt sick on and off, but mostly sleeps it off. He is on another creative surge�stayed up all last night working on shapes in Illustrator�like glass buttons. He also composed some more music. Erik gets next week off chemo to recover, then starts again after Camp sunshine and his trip to Austin for the Planet Cancer weekend retreat.

He made some funny observations. He got a package of info on Planet Cancer and he noted the trademark color of their materials�BLACK. He commented on the contrast: Camp Sunshine materials and themes�bright YELLOW and Yogi Bear�vs. Planet Cancer�BLACK and some...ummm...unchildlike humor. Example:

Some top ways to stimulate the cancer conversation:

~For testicular patients getting a prosthesis: do these come in brass?

~Guess which breast is the real one!

~All this radiation and I don�t glow in the dark? What a gyp!

~Does this port make me look fat?

~Just call me Dandelion-head. Make a wish and blow.

~Eyebrows are so last season.

~It�s 11:00 am and I�ve been stabbed, felt-up, and drugged. How�s your day going, Doc?

So Erik will journey from Jellystone to Planet Cancer next week�should be quite a ride!

Thanks for thinking of Erik!
Donna

Monday, October 15, 2007 11:36 AM CDT
Erik has been VERY sleepy on the morphine. I am so happy Erik's NP and onc at U of MN have agreed to try and get him on celebrex instead (for pain, but recent studies show some synergy with chemo). This is always no small task with insurance issues--medical assistance thinks he should just take ibuprofen--I feel so badly for how much long-distance work we cause our beloved NP!

This weekend he had the most WONDERFUL surprise imaginable! Cherie drove up for a visit Saturday morning from U of MN (3.5 hours drive!) and we all enjoyed her visit immensely! We had a nice dinner, a rowdy game of cards--which included Karl's girlfriend Raeanne and her mom too--while poor Erik slept on the couch, a very late night working on a very challenging physics lab report with Cherie (this was great fun for me!), and a pancake breakfast, and a little nap, before she had to return to U of MN...

So we will see what this week brings. He gets chemo every day this week at the clinic (just IV irinotecan, no temozolomide) and we have blood counts checked and liver panel.

Still haven�t figured out logistics for Camp Sunshine which begins this coming Sunday. He wants very much to be part of the fundraising activities before camp starts, so we have to figure out when to go (and he finishes chemo Friday afternoon).

After the week of camp, he leaves Minneapolis for the weekend retreat in Austin TX for young adults (18-25 year olds) hosted by Planet Cancer. I hope so much he is feeling well enough to really enjoy the weekend. The plane tickets were ridiculous (tight time frame) $700! UGH. But he will be reimbursed for some of it with a travel scholarship, so we are very thankful.

Meanwhile I am scrambling every waking moment for every possible treatment option, which is at times extremely discouraging, knowing full well there is no known cure. So we continue to pray for miracles.

And please keep praying for the Tran family. Watching Lucas progress so rapidly is heart-wrenching beyond description. And SO many children who have relapsed after Erik are already gone. I am so humbled by how we have been blessed to have Erik doing as well as he is�and so sad for the many families who have recently lost their children�. Julia, Penelope, Elesha, Paul, Nathan, Nate, Lillie, James, Lucas, and on and on the list grows. Each one such a precious child!

Thanks for checking up on Erik, and we are so thankful for your prayers.

Blessings,
Donna

Friday, October 12, 2007 11:38 AM CDT
PLEASE PLEASE PRAY....

for Lucas Tran

...SEE LUCAS' PAGE

what a nightmare for this beautiful family...

and please pray for this chemo to work for Erik!

Last night he noted new pain in his right rib...he is now on slow release morphine (20 mg kadian)

Bless you friends...
Donna

Wednesday, October 10, 2007 11:17 AM CDT
Dear Friends,

Keep praying for relief for Erik's increasing pain. He graduated to harder pain meds yesterday (roxicet) but cannot take more because of the tylenol contained and his recent liver issues. He will hopefully be switched to straight oxycodone this afternoon if we can get a prescription written by a doctor at the clinic here (the docs at U fo MN cannot call in a prescription since it is a narcotic).

The pain in his spine is bad, and he is now also having pain in the pelvis (also due to tumor growth).

Please pray that the chemo will knock down the disease and give him relief from the pain.

In the past, (first dx in 1991, and relapse in 2005) high dose chemo knocked down the pain from tumor in his bones rapidly. I am praying this chemo will do the same.

Meanwhile he is tolerating the irino and temo chemo well, no nausea really. He even played volleyball on Monday night for two hours, after the first dose of chemo. Probably a very bad idea, considering the tumor load in his spine, and the fact his port was accessed (big needle in his chest, and tubes hanging down--and he did get hit twice in the chest by spikes! UGH!!!!!) But he had so much fun, he said it was worth the pain. I haven't seen him serve before, wow he is GOOD!

The night he got back home from Camp Sunshine in Wisconsin we all made sculpey sculptures. See the photos in the photo album!

The plan is to finish this two-week chemo round, go back to Camp Sunshine next Friday or Saturday (Oct 19-20) for fundraising events, stay for the next session of Camp Sunshine (I'll be Erik's helper with the teens!), then the day it ends, Erik flies to Austin TX for a retreat for young adults going through cancer treatment (18-25 year olds). Then he gets back Oct 28 and starts chemo for two weeks the 29th. After he recovers from that round, he'll be scanned and biopsied again.

Whew.

Keep praying!

Love Donna

Friday, October 5, 2007 3:43 PM CDT
GREAT NEWS:

Erik's LFTs are beautiful! (His liver is much improved from last week!)

LDH is down to 700 from 1464 last week (normal is 325-750)
ALT is down to 83 from 702/583 last week (normal is 0-70)
AST is down to 53 from 589/238 last week (normal is 0-55)

Only bilirubin is up a little, but still in normal range.

So Erik is cleared for chemo the next two weeks. The pain in his spine is bothering him quite a bit now, so he is taking ibuprofen. Hopefully he won�t need anything stronger and the chemo will knock down the disease in the marrow causing the pain.

He had a wonderful time at Camp Sunshine and has many stories to share about the amazing kids and families he met! This Camp is truly his passion!!!!

I am sure he�ll post his thoughts and experiences soon!

Thanks for praying!

Blessings to you!
Donna

Wednesday, October 3, 2007 9:10 AM CDT
No news really. Erik made it safely to Camp Sunshine in Wisconsin Sunday night (more than 6 hours away) and he was enjoying a good meal last I heard.

Hoping no news is good with regard to the pain in his spine. Tomorrow he will be heading back to the U of MN for blood tests, and we appreciate prayer his liver function tests are back in the normal range. If they are still too high, he cannot start chemo next week�and that will throw a big wrench in the next Camp Sunshine session at the end of October! He is due to start back on cefixime (Suprax) tomorrow to help counter the nastier effects (in advance) of starting irinotecan.

We appreciate your care and attention for Erik so much! What a year it has been. It has been a good year. There is SO much we are outrageously thankful for, and we know how extremely blessed we are to have love and support from you AND the merciful response Erik has had to relatively easy treatments the past year. May God allow Erik to continue to serve Him another day!

My perspective on this is hugely impacted by the lives of the little warriors we see fight and die in this battle. We have made attachments to such a large circle of fellow fighters, especially in the neuroblastoma world (due to the nblast listserv and the CNCF NB conference) that I am continually praying for these friends, many are so small, and fighting vicious relapses that seems to be impervious to any treatment options. So many of these young families have young children, toddlers, babies on the way or just arrived, and traveling all over the country for treatment options, and moms and dads not able to work�their life style in this war is really beyond anything I can imagine. And it is not just the cancer! The treatment is so intense there are shocking and deadly complications that come up frequently it seems. We�ve seen children die from viruses, organ failure, surgical procedure, infections, etc.

As you think of Erik, be thankful with us for the manifold blessings God has showered on him! And please include prayers for these little friends. It is so devastating to see families lose these little fighters.

Blessings to you this day!
Love,
Donna

Monday, October 1, 2007 8:29 PM CDT
PLEASE pray for our little friend Lucas Tran. He is 3 years old, relapsed, NB is encasing his optic nerves (lost vision)...SEE LUCAS' PAGE!
http://www.caringbridge.org/visit/lucastran

Saturday, September 29, 2007 1:36 PM CDT
hey everybody its me!

i'm sorry i haven't been updating everyone on all the stuff that's been happening lately... cuz there was a lot of it! haha!

the last two days were great since i got back from the u of m on wednesday night... i stayed in my jammies the entire time and played video games with my siblings. it was so great not to have somewhere to go and something to do (well... i did have website work i needed to do... and an oil change i should have gotten... and maybe a little packing??) but i felt like i just needed to put the world on hold and just chill out for a while... too bad its over now!

i have a wedding to go to at 3pm... probably won't get back home till late after the reception and everything... then i was planning to go to church again with my family... but i have to leave for wisconsin around noon so i'll be at yogi bear's jellystone park before dark. this time i'll actually be there for the lead counselor training the next day before the families arrive. i'm not going to lie... i'm absolutely psyched for the next session of camp sunshine!!!

its a short session... only 4 days, but i'm waiting till its over to think about new treatment coming up... i'll probably see my doctors on the way back through the u of m and have to get some labs. my mom just posted an extensive coverage of the medical stuff yesterday, and you can read about it in the journal history. personally, i think camp sunshine is way more exciting than all that medical jargon--if your reading this and planning to come to either session in october, be sure to message me so we can catch up at camp!!!

also i've got a few more of those big long... essays that i write on my thoughts in my palm device. just tell me if you want to read them, and i'll post them on this site!

later!!! ;)

Friday, September 28, 2007 12:59 AM CDT
Update from Mom:

Erik has progressed, and is off the fenretinide trial.

I am sorry for the slow update. It has taken time for us to collect our thoughts and figure things out.

Erik had the bone marrow biopsy on Monday--which was a fiasco. His own beloved doctor did not do the procedure. The doctors attempting to do the biopsy (after we warned them Erik is known for cast-iron bone hardness from 23 bone marrow biopsies�) only got a smidge of cortical bone, so we gained no information from the biopsy. They were able to get some aspirate, which did contain NB tumor cells.

His PET/CT (Tuesday) showed uptake in every bone in the skeleton. The area of most concern is the spine, especially the thoracic vertebrae, which are all very bright. The doctor ordered an MRI of his spine to make sure the NB is not crossing into the spinal column, which can cause sudden paralysis. The MRI was finished late on Wednesday evening (we got home at midnight) and we just got the MRI results�no spinal cord compression. That is good. But it does show the marrow in his spine is packed with NB--his doctor wants him to stay away from the trampoline!

His VMA jumped up to 9.3 (two months ago it was 3.3, normal is 0-7.4). That is bad--evidence of growing NB.

Erik�s doctor went over the options with us on Wednesday, and lovely Cherie was able to join us between classes to meet Erik�s doctor and hear the straight scoop. I am always overwhelmed how kindly we are treated by Erik�s phenomenal doctor and equally outrageously wonderful nurse practitioner. The doctor and NP both gave up their lunch time to meet with us since their clinic day is Thursday and they didn�t want to make us stay in the cities an extra day. Truly they are the the most incredible, wonderful, beautiful people on the planet!

He had discussed Erik�s case with other NB specialists before meeting with us. He brought up a new possibility�genetically engineering Erik�s T-cells. This is accomplished by collecting the T-cells by apheresis (as with the stem cell harvest), genetically modifying them so they will recognize and kill the NB, and giving them back to Erik. Erik�s doctor is going to City of Hope in CA for a meeting and will hopefully be able to look into this option more while he is there.

Doctor mentioned 3F8 again, but Erik does not want to do the high-dose chemo required, especially with the possibility of quick HAMA (human anti-mouse antibody). I am hopeful that at some point he may be able to do the humanized form of 3F8 if that becomes available in the next year or so, so he would not have to undergo high-dose chemo first. He has taken a beating with 20 rounds of chemo (including two transplants, one with radiation to all his bones and marrow): high-dose chemo may be too much for his bone marrow and organs.

Meanwhile, the only NANT study he is eligible for is CEP-701, but we all hate to risk more progression at this point with another Phase I (unproven) drug. That may be a possibility later if the study is still open and we can beat the cancer back down with more chemo.

Consensus is that Erik's best shot right now is with more irino/temo since he responded so well last spring. Erik has agreed to start on irinotecan and temozolomide again, after next week�s Camp Sunshine session. The extra week will hopefully give his liver a chance to calm down too, since his LFTs (liver function tests) are 10x normal right now. It is assumed it is due to the fenretinide (EBV and CMV virus titers came back normal), but this seems strange to me since the numbers were all in the normal range after the first round. (Last round ALT was 46 and climbed to 702 this round�normal is 0-70). His LDH jumped up too�last round it was 158, and now it is 1464. At relapse 2.5 years ago when he was loaded with disease (with significant tumor lysis), it was only a little over 600.

After two weeks of chemo, he'll be free to serve as lead counselor again at Camp Sunshine Wisconsin the last week of October, and then go to Planet Cancer weekend retreat for young adults (18-25) with cancer in Austin TX, and get home just in time to start round 2 of irino/temo.

As if this week wasn't exciting enough, my mother was hospitalized in Lubbock TX with serious liver and kidney complications while traveling from Minnesota to southern New Mexico. They currently think she contracted hepatitis A from Chinese food! Not sure I am convinced, but very hard to doctor/diagnose her from Minneapolis! Thankfully she is MUCH better now and was released yesterday to travel to Las Cruces with my sister-in-law Tina, and my brother David rode with my Dad to help him get the RV set up in Las Cruces. They were also in an accident and had to get a new truck while in Lubbock! Always something, right?

We had the blessing of enjoying pizza and dessert with Anna Getchell and her cousin Donika and a friend. Anna is doing very well. She lost her husband Judge almost 2 years ago to lymphoma. What a blessing to see her!

So, how is Erik doing? Constant nagging pain in his back, and feeling tired, but as you can imagine Cherie has been a HUGE encouragement to him! Who wouldn�t be bummed by this rollercoaster ride�relapse, dramatic response, transplant, long recovery, relapse again, progression, dramatic response, progression, new drug, progression�.ugh. Even though this situation is hard, he truly believes God is wise and good, and we have all praised God continuously for the PERFECT SUMMER Erik has had, capped off above and beyond all his expectations by meeting a beautiful girl! Cherie is a long term survivor of LCH, and is a pre-pharmacy student at the U of MN. She is smart, funny, very pretty, and cares very much for Erik. What more can you ask? Providentially, she is very conveniently located near the cancer center at the U of MN. (So Erik can�t WAIT for his next doctor visit!) Erik was so happy to see her between classes, clinic, and hospital activities to eat and do physics problems together! It's a good thing she is an ace in organic chemistry--because Erik isn't any help there!

What else?

I would say Erik has experienced intense emotional pressure since his relapse last fall/winter. Only those who have gone through such a battle really understand, and Cherie is among that elite group! He has been continuously tugged and pushed and prodded at from all sides to �do this,� �take that,� �don�t take anything,� �just pray,� �believe you are healed,� �take these supplements,� �try this drug,� and on and on and on it goes�etc etc etc�.

This gets to be very trying. You can take my word for it.

Please pray for him with regard to all decisions. And please pray for all those around Erik who are impacted by his situation. May God show us all WHO HE IS, a wise and perfect God, who wants us to lay our burdens at His feet.

Please continue to pray earnestly for Erik. I am so hopeful he will respond well again, and continue to live each day to the fullest.

Blessings to you,
Donna

Monday, September 10, 2007 9:26 PM CDT
ERIK IS HOME!!!

We missed him so much!!!

He had a wonderful adventure, tainted a bit at the end by his new medication, fenretinide.

He felt much more nauseated (threw up one dose, ugh), and has been suffering from severe �intestinal distress� since he started the med on Thursday. His girlfriend Cherie came up with a great fresh fruit banana/strawberry/Odwalla juice combination to mix the fenretinide powder with that is palatable enough (he gets it down easily) but sadly the intestines are still having a �fit.�

I called the on-call doctor at University of Wisconsin tonight to find out what to do once he had taken 4 imodium in 12 hours (the max dose for 24 hours) with no relief in sight.

The kind doctor called in a prescription for Lonox and Karl raced to the pharmacy to get it JUST before it closed.

So please pray for Erik to get through the next couple days!

Tomorrow we have a farewell dinner for my parents who spent the summer here (at my sister�s) but we did not see nearly as much of them as we would have liked... and Wednesday we go back to U of MN for more pharmacokinetics.

Erik will have a real break the next week, then scans and biopsies again the last week of Sept. If the scans are good, we�ll go directly to UW-Madison to get the drug for course 3. If they are not good, we�ll need a new plan.

Please pray!

Blessings,
Donna

Thursday, September 6, 2007 7:15 AM CDT
*
Late morning news flash--

Trigs were down to 130!!!!

So the first dose of fenretinide for round two is down too. (This is a big deal--he would have had to return to Madison next week if the trigs did not come down!!!)

So Erik gets to lounge around the GCRC (clinical research center at UW) until 6 pm getting pharmacokinetics done, eating a lot I hope, and catching up on his rest!

God is SO GOOD!!!!!

*

Erik made it to Madison last night!

Praise God.

After an amazing time at Camp Sunshine and spending many hours over the course of many days working on the World�s Tallest Sandcastle (while the other volunteers were napping!) �he was exhausted. The sandcastle was for the Guinness Book of World Records�30 feet high and for promotion and fundraiser for Camp Sunshine.

He flew to NYC, then into Chicago yesterday afternoon, and Anna picked him up around 4 pm. I can�t imagine the traffic from O�Hare going to the suburbs! Sweet Anna! And she had her scans yesterday! What an incredible young woman. He was so tired and really wanted to see more of the O�Connors, and considered staying there for the night and driving this morning to Madison (leaving at 4 am???) �needless to say I am very glad he decided to go to Madison last night. He checked into the hotel and asked for a fridge for the medication (good move�I just messed with bags of ice in the cool-pack!)

Now�we are waiting on the triglycerides�.

Thursday, August 30, 2007 9:05 AM CDT
Not much news from Maine so far, but I trust Erik is doing well. He is low on cell phone minutes! He did call Tuesday early morning saying Camp Sunshine did not get the order for the blood tests they were supposed to do (day 13 of the cycle) but it turned out the faxed order was in his volunteer folder for over a week. So three hours later (fasting) they finally got it straightened out with U of Wisconsin.

I was annoyed because the research nurse and I exchanged several emails (and even dragged the doctor into it) about Erik�s triglycerides and if he should fast and what he could do about diet before the test. Well, after all that, turns out it was never required for day 13 tests, so we do not know if they came down. And he fasted for nothing! Ugh! Minor annoyance, I know.

Meanwhile, life here is good. We are gearing up for school: ordering books (finally), I have an ACT prep class to teach, math tutoring, and art and drama classes lined up for Lesa and Aron. Lesa and I are still studying Greek, and just started a bible study with the church youth girls. Erik is being switched to medicare since he has been on disability for two years, so I am scrambling to figure out that mess. Looks like it could be a very expensive change, but he may be able to stay on medicaid too, since he is pretty destitute!

Hopefully Karl is on the brink of finding a job�although he is helping Paul with computers quite a bit. Just doesn�t pay much!:) We have played very little tennis this summer, and would�ve loved to have seen my parents more (they are in a RV for the summer at my sister�s 45 mins away).

All in all, God has blessed us outrageously this summer.

But I have a heavy heart for those families that have recently lost their children to this disease.

Please pray for the families who have lost their precious children. There have been so many since we started down this road over two years ago.

www.caringbridge.org/visit/lillieboyte

This precious girl Lillie was only diagnosed last fall at 3 years old and is already gone. The photos of her will break your heart.

Please consider a small donation to the Loneliest Road Campaign (see banner and link above) and pass on the story! It will be the subject of much media coverage.

The Five Fathers (of neuroblastoma kids) are riding across the country in a few days to raise as much as possible to bring a potentially life saving treatment (new humanized antibody) to kids dying of this wicked disease.

Two other fathers started Magic Water to bring new effective drugs to kids with neuroblastoma.

www.magicwater.org

And of course Children�s Neuroblastoma Cancer Foundation (with the fundraising arm Lunch for Life) continues to fund important neuroblastoma clinical trials, like the one Erik is on right now!

http://cncf-childcancer.org/
and
http://www.lunchforlife.org/

These programs are all so critical to stop the continual losses to this disease. By far the majority of children who are diagnosed with high-risk neuroblastoma will die, and most of them are so young! Average age at diagnosis is two years old. It is so sad.

Erik was the subject of a recent publication! Email me if you would like to see the article: ludfarm@arvig.net

Hui SK, Verneris MR, Higgins P, Gerbi B, Weigel B, Baker SK, Fraser C, Tomblyn M, Dusenbery K.
�Helical tomotherapy targeting total bone marrow - first clinical experience at the University of Minnesota�
Acta Oncol. 2007;46(2):250-5.
PMID: 17453378

Thanks for praying for Erik. Please pray his triglycerides come down and that he can start the second course on time (next Thursday, Sept 6) and he won�t have to make another trip to Madison! And please pray the fenretinide is working! The pain in his back comes and goes. Scans and biopsies are scheduled for the end of September.

Lastly, his counts done at the U of MN before he left for Maine were remarkable! For the first time in 2.5 years his hemoglobin was in the NORMAL RANGE!!!! Halleluiah! It was low before he was diagnosed, because his bone marrow was so packed with tumor, and of course all the chemo, then the marrow irradiation and chemo for stem cell transplant, and long recovery, then relapse and more chemo�you get the idea!

So exciting when they have hair AND their counts are a thing of beauty!

Blessings to you,
Donna

Thursday, August 23, 2007 8:41 PM CDT
Well, round one of fenretinide is history, and Erik fared very well. Thank you for praying!

We went to UW to get the drug and complete the first day of pharmacokinetics, and then back to U of MN for day 6 and 8 pharmacokinetics.

We stayed at a hotel near the U of MN and visited the Ronald McDonald House one day. We were blessed to see old friends from Egypt who were there two years ago! Lesa had great fun catching up with her friend Rowan, and Aron checked out the new playroom!

Erik really weathered the fenretinide well, and the only snag at this point is his triglycerides. They are very high (286 non-fasting and 290 fasting, normal is under 150) and if they reach 300, he cannot get the next round. His PTT (partial thromboplastin time) is also high at 61 and normal is 22-37 sec. We appreciate your prayers for answers and solutions here! I told him to buy sardines in olive oil and eat a couple cans a day�

Now he is off on his great adventure. Karl drove to the cities to pick up Lesa, Aron and me, and we are now home!

First Erik is catching up with Anna Getchell in St Paul (who lost her husband Judge to lymphoma during Erik�s last transplant almost two years ago) and who has been so incredibly supportive of Erik through thick and thin. He then will be blessed to see the Harlans in Wisconsin (all the brains and endless energy behind Camp Sunshine in Wisconsin!) and then he is off to Chicago to visit with the O�Connors. He flies from Chicago to Portland, Maine to volunteer at Camp Sunshine in Casco, Maine from Aug 27- Sept 5. He was last there in 1993 when he was 8 years old and had recently recovered from treatment from his bone marrow transplant.

He flies back to Chicago on Sept 5 and will drive to Madison that night, ready to begin (hopefully) the second round of fenretinide Sept 6. He�ll have pharmacokinetics again all day on the 6th, spend the night in the hotel, and then drive to U of MN to visit with friends, and then home on Sat Sept 8.

Really, I am not panicking too much. He can do it.

A myriad of logistics goes into this, with not much room for flat tires, fevers, or feeling extra sick. Please pray for Erik during this Great Escape! He has been looking forward to this for a long time, and we are extremely grateful a lot of flexing was done by the medical establishment to make sure he could follow through with his plans!

So now you know how to pray the next few weeks�

After he begins the next round, he�ll go back to U of MN for pharmacokinetics again, then back to U of MN for scans and biopsies before starting the 3rd round the last week of Sept in Madison.

Got all that? Good. Thanks for praying!!!

Blessings!
Donna

Friday, August 17, 2007 9:41 AM CDT
MOM�s UPDATE:

Okay okay.

Now and then the engineering-type Mom does break from her mold and the accompanying fact-filled world of neuroblastoma and think about what else is going on. She even writes about it occasionally.

It just so happens I have been thinking about Reality Shows. I thought about it quite a bit actually, on our little 934 mile round-trip jaunt to Madison�

Now, I have never seen any reality shows. I have heard about them. I did see The Truman Show, but I don�t think that captured the true spirit of reality shows, am I right?

Guessing here, but I think the pull of reality shows is that the story is happening real time, there is no script, and unlike soap operas, there are no predictable characters. Always stranger than fiction. Am I right?

Where did this come from??? Well, I read caringbridge-type sites because I want to know what is happening with real little (and some big) heros who are fighting for their lives. What is the difference between this and Reality Shows? I am not sure what actually happens on Reality Shows. But I do know that I personally feel an awesome responsibility and charge to pray for these little warrior friends. Constantly. And I hope you feel the same compulsion to pray for Erik!

I have also been thinking about Brandon Heath, and his gutsy little song.

Surely you have heard his song �I Am Not Who I Was.�

He talks about how it took a lot of guts to write this song, and then let anyone else hear it. Why? What is more common to humans than love and broken relationships, and the quest for healing?

The response to his song has been tremendous because so many of us do understand exactly what he is saying� �I am not who I was�� and �I wish you could see me now.�

If you have not seen his videos, check this out (I especially like the second myspace video --on YOUTUBE):

http://www.myspace.com/brandonheath

or

http://brandonheath.net/

�The thing I find most amazing, is amazing grace�is the chance to give it out�.maybe that�s what love is all about!�

This song hits me powerfully, because I see the truth of these words every day in my son!

Erik is so full of love and life, after such bitter struggles... really a drama that has far eclipsed my own very limited experience. Beauty from ashes. Oil of joy for mourning. Erik has emerged from love and loss in his tragically brief marriage to Brandi with a heart full of true compassion, forgiveness, responsibility, others-focused...the image of Jesus firmly imprinted in his soul. He has experienced true love and forgiveness and the miracle of new creation in the hands of our Lord Jesus. He is transformed. In Ezekiel God promises to remove our heart of stone and replace it with a heart of flesh, and give us His Spirit so that we can walk in His ways.

This is Erik�s story.

I just wish everyone could see him now!

So, still interested in the medical details? Or should we just leave it there?

Well, glad you asked.

Thankfully, the Tuesday tests at the U of MN were quick and uneventful (echo, EKG, chest x-ray, vision test, and labs). We had the pleasure of dropping off a pastor friend to a little town in WI to buy a motorcycle, so he accompanied us in four different waiting rooms in three different buildings at the U of MN, all in record time. All systems go, and everything got faxed to UW-Madison Tuesday afternoon (while we drove the additional 4.5 hours there) for an early Wednesday morning start at UW in Madison. We stayed at a hotel only two blocks from the hospital.

We registered promptly at 7:00 am and Erik was admitted to a private room in the hospital floor known as the GCRC (General Clinical Research Center) and Dr Sondel examined Erik at 7:30 am sharp. After a complete review of the trial and consent with the most personable doctor Sondel, the nurse accessed Erik�s port so we were all ready for the many blood draws necessary for the pharmacokinetics.

Then there was teaching about how to handle and take the drug. It is a yellowish lumpy powder, fairly tasteless according to Erik. But it does not dissolve in the SlimFast so the lumps get caught in his throat. More Slimfast, and it is all down. The powder comes with all kinds of restrictions: wear gloves, mix in plastic cups and throw away the cups and spoon and gloves after mixing, etc. Warning, this is for investigational use only. Might as well say �For lab rats only!�

The big event (actually taking the drug) was delayed by 2 hours because CHLA sent the drug but no scoop. The pharmacy at UW considered it downright incredulous that CHLA would not allow the drug to be administered with just any scoop, it had to be CHLA�s scoop. I would think in this day and age it would be fairly easy to come up with a scoop of the same exact volume to measure the drug, but noooooo. What a silly reason to flunk the first day! CHLA sent the proper scoops over night, promising that it would arrive before 8 am. Whew, only 2 hours late and ready to go.

Erik had a room full of people standing there watching him intently take the powder, and record how long it took him to measure, mix, swallow, and scoop every last lump of drug out of the cup. Seven minutes, not bad.

So the rest of the day was really sleepy. I tried to read but felt more like sleeping. It rained almost all day. Erik felt a little nauseated around 5 pm. The last blood draw was at 6 pm, so we walked back to the hotel and ate at a Korean restaurant, trying to be cautious for Erik�s stomach sake. He did begin to suffer intestinal distress that night and into the next morning, but some Immodium helped tremendously. We drove back and he slept quite a bit.

So, next is arranging next weeks stay for more pharmacokinetics at the U of MN, and keeping Erik on track with taking the new med!

Thanks for checking on Erik!

Blessings,
Donna

Tuesday, August 14, 2007 5:11 AM CDT
I bet you guys are getting pretty tired of reading the non-stop medical updates from this site. This site has allowed us to chronicle my life's journey as it developed over the last two years... and I don't think it should read like a medical text book all the time. It's a story, and I think it's about time we added a little romance to it.

Camp KACE was amazing. I was assigned as counselor with the 15-17 year old boys. Nobody else seemed to want the job, but I thought my experience at Camp Sunshine would help. At first, I received the 'new guy' treatment from the kids that had been going to this camp for years, then as the week progressed... I slowly started to gain their respect and friendship. It's always wonderful to hear at the end of the week they all want me to come back next year! The circus theme was so much fun and it was great to catch up with Dr. Kobrinsky as he and his family spent the week at the camp.

While that made it rewarding enough, it's not all that took place that week. Some of the kids who are too old to keep going to camp choose to come back as CITs (counselors in training). Cherie Baumler was one of them. The first day was set aside for preparations and so the staff could all get acquainted and we ended up playing cards late into the night. The next day on break, Cherie and I struck up a conversation about our treatment experiences and instantly connected in a way I hadn't felt for a long time.

Also, without even trying, she made me realize a lot of thoughts and emotions I'd been trying to bury with all my activity lately. The tower of strength I'd been trying to build through all my volunteering and fun with my band had a key part missing... a hole in my heart that could only be filled by someone who really understood me. I feel like I'm complete now. There's nothing left that I need to keep staying strong. As much as it scares me to add a relationship to everything else that's going on, I'm more excited then ever.

Today I took her out to eat, then spent the afternoon playing at her old middle-school playground. We climbed all over the equipment, played a game of tic-tac-toe, went down the slides, and chased each other all over the place. I felt like a little kid again, without a care in the world. Amazing how another person can make you feel like that. We ended the night by watching the stars come out. Just perfect.

It's a little bit of a long distance relationship, but completely worth it. I'm confident it will all work out.

********************

I'm leaving in an hour for the UofM to get some scans, then heading straight to Madison, WI and the fenretinide trial. Don't worry, I'll get some sleep during the car ride.

(btw... I think the coffee-flavored Slim Fast tastes the best... hope it mixes well with the drug!)

;)

Thursday, August 9, 2007 9:16 PM CDT
More news from MOM:

After a flurry of phone calls today, looks like Erik will be on the fenretinide trial after all, thanks to some really outstanding individuals going far beyond the duties required-- especially our own NP Jody!!!! I wish I knew what sort of car she likes! Or maybe I better settle for chocolate! 

Since I could not call Erik, I drove to the camp to take him the consent form, which was needed right away to keep his slot in the trial. We read through it together, although it was familiar to both of us. He did have some good questions and was able to talk to Dr Sondel for 45 mins by phone. He signed the consent and we got it faxed to U of Wisc. In addition to this�another flurry of calls trying to get all the qualifying tests scheduled for the trial. He needs an echocardiogram, EKG, chest x-ray, eye test, and labs.

We are tentatively planning to get them all done at the U of MN Tuesday, and then drive that evening to Madison (another 4.5 hours past Minneapolis). He�ll be seen by Dr Sondel, and then take the new med, and then have blood draws done every 2 hours for 8 hours to determine pharmacokinetics. We�ll spend the night and drive back home.

We�ll have to go back to U of MN twice in the 3-week cycle for more blood draws, and additional tests to monitor response..

Since this trial has accrued a fair number already and the dose level has been raised many times, Erik will have to down 16 scoops of powder mixed in slimfast every morning and every night for one week, then have two weeks off.

Let�s hope it really tastes good.

Meanwhile he seemed okay at camp. He has the teens this week, and they were all swimming when I got there-- a beautiful hot August afternoon. Tired maybe? He had a vacant look in his eyes. Not our Erik! Please pray for him! His back does hurt, and he truly has the world�s highest pain tolerance. He has so much he wants to do, and so much to figure out with regard to work and treatment and volunteering.

Please pray for him!

Will post more soon!

Donna

Wednesday, August 8, 2007 9:36 AM CDT
From MOM:

Erik is having a blast at Kamp KACE!

http://www.kampkace.com/entry.htm

He put his cell phone in the trunk of his car this week...so he is incommunicado...he is focused! I am so impressed with his sense of adventure. He packed up, went shopping for circus supplies, gathered together some fun costume items, and grabbed his juggling equipment and was off!

They have the volunteers come a day early to prepare and decorate. He was so excited!

Immediately after the camp ends on Friday, he goes to Ottertail to play with his band at the five-day event called "The Gathering."

http://firestartersmusic.com/thegathering2007/

Please keep Erik in your prayers!

Not sure the fenretinide will work out at this point, and he is having pain in the T3 vertebrae that lit up on the PET/CT.

Blessings to you!
Donna

Thursday, August 2, 2007 7:51 PM CDT
What a strange day.

What an odd reminder�of the sting of perspective. We could have driven home from his biopsy and scans on Tuesday and the bridge under us could have collapsed and we could have been crushed or drowned. Just like the 100,000 people who cross that bridge everyday, we have crossed that bridge many times and never given thanks that it remained standing as we passed over it�funny how many times I thought about THAT very thing today, as I crossed many bridges! From Park Rapids to Minneapolis you do cross the Mississippi River an inordinate number of times.

We left at 5 am this morning, aiming for a 9 am appointment, wondering how on earth the traffic would be affected by the bridge collapse�praying all the way for those families who waited all night for news of missing relatives�I just can�t imagine. Suddenly the world did not revolve around us, around Erik�I prayed that Erik�s beloved medical team was in no way affected!

I expected HORRIBLY backed up traffic considering there are few alternate routes to the U of MN. Instead, the traffic was the best I ever experienced going for a morning appointment. Ever. The traffic was solid, all lanes full, but moving at an excellent clip�50-60 miles per hour.

But with a nanosecond of notice, a 10-foot aluminum ladder appeared from underneath a small truck in the highway in front of me�the undercarriage of the truck was just high enough to clear the ladder. I had no choice at all (with cars on both sides of me) but to hit the ladder in Erik�s little car! His car sits low enough it made a terrible crunching/smashing racket as I hit it at 50-60 miles per hour. If I swerved, we�d be dead. If the ladder was lying at more of an angle than parallel to my approach, we�d be dead. Good grief. Weird things happen, and God in His outrageous mercy spared us again.

So�the results of Erik�s scans and biopsy!

HVA and VMA still extremely low-normal ( 2.8 and 3.3...essentially unchanged the last month)

It was not as bad as it certainly COULD have been. We are all happy and very thankful. Thank you GOD! I consider the results nothing short of miraculous since he has been off chemo for four months.

Erik does have three new spots in his spine and one new spot in his pelvis. SUV are 5.2, 3.0, and 4.0, compared to previous brightnesses of 3.1 to 9.3 range for last Feb scans. Last January showed 75 percent neuroblastoma in the biopsy on the right side, while now there is less than 5 percent on the right side and none in the left side. That is pretty good. (But none is better.)

Last April the spots in his pelvis were very faint (2.6 to 3.4 range).

So what to make of this? First of all it is VERY STRANGE that the faint spots present in the pelvis in the April scan have disappeared. That usually does NOT happen. That is good.

But the new spots are of concern. So Erik has decided he would like to try the new oral formulation of fenretinde. He has been considering this trial for some time anyway. We�ll be talking to the doctor who oversees this trial at University of Wisconsin in Madison to learn more about the logistics.

Please keep up the praying!!!!

And please keep the bridge disaster situation in your prayers�

Love,
Donna

Well, mom did a good job telling about the doctor meeting, so I'll just update about what else is going on.

First of all, a great big thank you to Jeanette King for sending me that awesome keychain!!! It is awesome and I'm keeping it in the little case it came in. ;)

Tomorrow at 3:00pm, I'll be at Camp KACE. They are having a circus theme this year, so I'll be goofing around in a clown costume all week. Shouldn't be too hard for me to pull off... ;) A few of the staff that treated me in Fargo, ND after I first relapsed will be there too. It will be great to see them again and catch up on all thats happened since! As soon as I'm done, I'll head over to Ottertail, MN for my band's performance.

While there is no way I would ever turn down the chance to volunteer at a camp for kids with cancer, it will take some time out of my web development and band practice. I currently have two sites up and running now:

www.echoknight.com
www.hubbardcountyyouth.org

Take a look if you want! I still have a lot of work to do, and neither of them have been entered into any search engines yet... but soon!

Wednesday, August 1, 2007 5:52 PM CDT
WAITING

What do you do? Think, reflect. Update the journal...

Tomorrow we'll know.

Maybe it is ridiculous to drive for almost 16 hours (800 miles for 2 round trips to Minneapolis on Tuesday and Thursday) when we could have gone down on Monday night and stayed in a hotel until Thursday. But this way I don't have to take Lesa and Aron, and after our vacation and Lesa going to camp and then our camping trip, I think they are happy to be home for a while.

But then I thought "WHO'S DUMB IDEA WAS THIS???!?!?" when the alarm went off at 3:30 am after I went to bed at 11:30 and really didn't sleep a wink...Thinking...and praying for yet another miracle.

We left a little after 4 am and the drive was okay. Erik slept and I prayed more. We pulled up to the hospital exactly at 8 am and Erik went to the Ped Sedation center and I parked the car and went looking for coffee. I still love Dr Verneris with all my heart for allowing the exception in Erik's case for anesthesia for his biopsies (normally the cut off is age 18). This was the 22nd time a bone marrow biopsy was performed on him (and one of those was actually a bone marrow harvest for his first marrow transplant), and he has had 13 other surgeries that required anesthesia!

Can you imagine undergoing all those bone marrow biopsies without anesthesia? He did have four of them done when he was 6-7 years old...without anesthesia. They told us the amnesiac they gave him would make him forget what happened...but he was stricken with TERROR when we entered that procedure room, so he certainly remembered. And how traumatizing for a mom to help hold down her screaming and writhing child who is having pieces of bone drilled out of the back of the pelvis??? Horrors.

I also love the person who discovered propofol!!!!

His bone is so dense and hard from the regrowth in the same spots the doctor gets a terrific workout trying to get a specimen of bone out of there...the nurse said he was sweating profusely and growling (?) under his breath about people who drink milk and exercise!

Anyway Erik's blood pressure dropped again to 60 something over 40... So they gave him two liters of fluid and by noon his blood pressure recovered to 90ish over 50ish...

So then on to the PET/CT. He was SO hungry after the biopsy having no food since the day before, he spent considerable time between procedures trying to decide what he wanted for lunch (which would had to wait until 3 or 4 pm after the PET because it also requires fasting). I cracked up when he started talking to himself about berry, pina colada, or banana...and wondering what he was talking about. He told me those were the flavors of the barium contrast he had to drink before the PET/CT. How desperate is that???? He said it definitely helps when you are starving to drink that stuff!

I was so tired during the wait I could not keep my eyes open to read. I went to the car (it was hot but in a parking garage) and fell sound asleep for 30 minutes but woke up when I heard a booming voice from a bullhorn repeating over and over "GET OUT OF THE STREETS!!! GET ON THE SIDEWALK!!!" and a multitude of other voices...I thought in my sleepy mind there might be a riot or something going on! This is a big college campus...so I jumped out of the car and looked over the balcony of the parking garage and saw a massive crowd of kids on a campus orientation tour! Ha!

And I always wondered about lying on his back after the biopsies for the scan...that must be uncomfortable! He never takes painkillers after the biopsies. Scan went fine, he fell asleep while they were scanning his head. He finally got his lunch close to 4 pm, and had a French dip sandwich.

We drove to Best Buy and got him a back pack for his laptop. He played his new Toby Mac CD and I liked it so much I listened to it over and over most of the way home. After three hours of that CD he put in Falling Up (he first heard at SonShine music fest) and I liked them also.

We got home around 8:30 pm, and it is raining this morning and much cooler after yesterday's 90-95 degree heat. We were going to pick more wild raspberries but the rain nixed that. We have some great spots on our property, and on Monday we picked more than 5 quarts! I would like to start canning green beans today. The new puppies must be keeping the bunnies and deer away (and maybe even the bugs) because everything in the garden is producing well and looks really nice!

Erik is working fast and furious on his first website. He has crammed hundreds of pages of the many manuals that came with his new Adobe software, and he just loaded it on his new laptop so he is in business, and has five websites to design lined up already!!!!

So how do I wait?

Thinking how thankful I am for every good day. And there have been sooooooooo many....Erik is in such a miraculous place now, emotionally, spiritually, and physically. He walked for four miles not too long ago and plays volleyball frequently with 'the guys'...plays in the band almost everyday, and frequently meets with individuals who need help or just a friend. He is on the go!

He leaves Sunday to volunteer at Camp KACE (another kid's cancer camp) and will get to see his previous ped onc Dr Kobrinsky and the nurses form Roger Maris Cancer center in Fargo! Then his band has a three-day revival to play at called "The Gathering" in Ottertail with the Firestarters group.

He is scheduled to fly out of Chicago Aug 27 to volunteer at Camp Sunshine in Maine until Sept 5. Then more Camp Sunshine in Wisconsin this fall...and thinking about signing up for college classes this fall also...

See God? He is way too busy for cancer treatment.

Blessings to you all,
Donna

PS I canned 7 quarts of green beans today! My grandmother would be so proud!

Tuesday, July 31, 2007 4:05 AM CDT
Leaving for scans and biopsy this morning...please pray for good news on Thursday!!!!

God is so good!

Blessings on you....

Donna

Monday, July 23, 2007 4:53 PM CDT
How am I supposed to get rest in this heat??? The thermometer outside is tipping over the 100 degrees mark right now. I was crazy enough to try running this morning, and when I got back at 11:30, I had probably lost a pound or two from sweating! I hope my band doesn't die from the heat when we play volleyball next Wednesday. At least I'm getting a really nice tan from all the sun.

Yesterday, I got back from my third trip this month. First there was the family vacation, then I went straight to SonShine Festival, and last week we had the annual homeschool camping trip at Oak Hills in Bemidji. Camping was great too, but thankfully just a bit less intense than the previous trips. I got a great workout the last two days on the kayaks, and spent the rest of the time catching up with other families I used to know (and met a few new ones) from when I was in the homeschool group.

Maybe it's a really good thing I went crazy this month and had a lot of fun, because now I have a lot of work ahead of me. While we were in the east coast, my web development software arrived. It contains 12 separate applications, enabling me to create anything web, cartoon, or graphics-based that I can imagine. The price tag wasn't pretty... but it was well worth it. Completely professional. Completely addicting. I've never been so excited about my future career in my whole life!

Almost forgot to add the craziest part of today... this morning, before I started running... I saw a grizzly bear. A huge, lumbering mass of brown fur ran from the field on the south-west corner of our land, across the dirt road, and into the forest on the other side. Less than 100 feet in front of me. Think I'm making this up? I'm not. If I was, I would have made the story more interesting... like maybe the bear was chasing an ox... a blue ox. It was fourth quarter, and the oxen were trailing the bears 10 to 14. After the snap, the ox had charged down the field towards the woods (the end zone), caught a hail mary, but was stopped short, just inches away from the line by the bears' fullback.

I'm serious. I saw a huge grizzly bear this morning. I've gotta start carrying a camera around everywhere I go...

Sunday, July 15, 2007 10:04 PM CDT
(MOM'S ADDITIONAL COMMENTS BELOW!!!)

Home. Finally! We got back on Wednesday the 11th, but I didn�t stop there� I�ll fill in from where I left off.

My mom and I made it over to the MSKCC and RMDH�so glad we did! The hospital was gigantic and right in the middle of NYC too. Shirley Staples and Mark Dungan met us there and Shirley had told us to pretend like we knew where we were going because New York has much tighter security� so it�s a good thing we found the waiting room fast! Next to it was a playroom for the kids getting treatment and around the corner was the antibody infusion area. Almost every pastel color was represented on different walls. I got the VIP tour from one of the nurses, and while I heard the treatment is incredibly painful, at least the floor was very nice.

Dylan Hartung is being treated there. I had called him earlier, but unfortunately didn�t make an appointment. We stopped by the RMDH anyways, hoping that he just happened to be there. Luck was on my side! I thought he appeared to be a very confident and approachable six-year-old from his TV interviews, but in person, he was even more amazing! We struck up a conversation about treatment and video games�seems like we have a lot in common!�and probably would have stayed much longer if my mom and I didn�t have a train to catch. What a cool little man! :)

Thy Tran�I'm so sorry we didn't connect up sooner so we could come visit you too! Hey... if your family can make it, you should really come to Camp Sunshine in Wisconsin! Its such a fun time!

Our trip was rapidly coming to a close though. Dad had to get back to his business and two weeks of a whirlwind tour was tiring for everyone! We made one last stop on the way in Chicago to see some old friends of ours. Jeff Robinson was our pastor when we lived in Massachusetts, and we last saw the whole family 5 years ago.

That brings us to Wednesday. We arrived around 5:30, just enough time to unpack the car before volleyball started. Then band practice, which ended at 10pm. I wish I had remembered to pack ahead of time because I needed to run back home, grab my stuff, head over to a friends� house, then leave from there at 7am the next morning for Sonshine music festival.

Three days of concerts from Newsboys, Toby Mac, Relient K, Hawk Nelson, and 85 more of the coolest Christian bands ever! Thousands of people were there, and the tents spread out everywhere. I was extremely impressed with Falling Up�yes, it had something to do with their use of four different keyboards at once�so I bought their Exit Lights CD and got it autographed. It was so worth standing in line for a half an hour!

Well� tomorrow is band practice, but after that I should be able to rest a little. I only have 3 weeks until Camp KACE starts. There�s one major thing I need to accomplish between now and then� I need to order my laptop and the Adobe� Creative Suite� 3 Web Premium. Artistic ideas have slowly been taking over my mind since our vacation started, and now I am desperate for my Photoshop fix. CS3 promises to be even harder to put down. I seriously can�t wait to start my web design business!

If my updates start to get even less frequent� you�ll know why.
~Erik

Mom�s update addendum:

What a wonderful trip in every way. Some parts were very surreal, like traveling a couple thousand miles in a smallish van with six people and no bickering. How is that possible?

The weather was absolutely gorgeous everywhere. Even with 170,000 miles on our van we sailed far and wide without a problem.

How I wish the NB conference was LONGER!!! Meeting people for a few minutes that you would love to talk to for days on end�ugh! But I am so thankful for the chance to meet these wonderful people in person�I can never express my gratitude for the incredible experience. And having such phenomenal presentations by the doctors is really amazing�

Erik enjoyed meeting Anna and spending time with her family, and again, not nearly enough time to visit with this wonderful family! Please pray with us that Anna�s new treatment will be effective for her!

The Creation Science Museum near the Cincinnati airport (actually across the river in Kentucky!) was incredible. We all loved it! The drive was decent to DC area (Paul�s brother and family live in Manassas). We stayed at Fort Belvoir, which is close to Mt Vernon. We spent the Fourth there with Paul�s brother while Erik was in DC at the Mall with his cousins.

Then we went the Air and Space Museum the next day, and took off for NY. Paul�s sister and her husband live in Long Island, and we enjoyed a couple days with them. Aron and Lesa LOVED swimming in Uncle Mike's pool!

We went to NYC and spent a day at the beach. We took to the kids to FAO Swartz and walked around Central Park. I enjoyed the walk down Fifth Avenue, but Erik was having a fit because we would not stop and buy shoes for Aron who had new sandals but the straps had just broken. We finally went into a shoe store (this IS Fifth Avenue mind you) and the cheapest shoes they had were plain flip flops that didn�t fit for $47! So� I gave 62 lb Aron a piggy back ride all the way back to Penn Station!

Erik and I enjoyed our visit to Sloan-Kettering very much. It was so nice for me to be able to visualize the place I have heard so much about! What was eery to me was I found out right before we went that Paul�s sister Ann was treated there for six months at age 16 for melanoma, and died there in 1972.

The drive from Long Island to Chicago was the killer day�16.5 hours in the car!!! But having very tired gang helped, they slept a lot! Seeing the Robinson�s was a blessing too. Jeff was the minister of our church and he came to visit Erik constantly when he was in transplant in Boston in 1992. Very few others visited, perhaps because of the obnoxious handwashing routine! Precious memories!

I am so glad to be home but can�t help marvel at what a perfect trip! Lesa went to a week-long camp yesterday, Erik got back from Sonshine music festival, and we have a camping trip with about a dozen families coming up this weekend. Karl is now in the job search mode, turns 18 next week, and Paul has thankfully been inundated with computer calls! (And Aron is very busy catching up with lego-playing!)

Obviously Erik is feeling great. I am amazed at his continued focus on encouraging little ones going through cancer treatment and praising God for the strength and ability he has to serve...

God is so good!

Erik has scans and biopsy end of July�please pray he continues to defy this disease!!!!

Sunday, July 8, 2007 4:08 AM CDT
I can�t believe this is the first family road trip that I�ve been on in� what? Four or five years? The sad fact is that it just might be the last. I had better enjoy it while it lasts. I�m not saying I�ll never get the chance again. It�s just that I am 22 years of age now� by the time they�re ready to take next one, I�ll have my own career and (hopefully) be living on my own again.

Our vacation so far:

Like mom said, Chicago was awesome. We left Park Rapids on Wednesday, so we had Thursday to go sightseeing. First stop was at the Museum of Science & Industry. It hosts the massive German U-505 Submarine that was captured during World War II. Just incredible! The history behind it was fascinating enough, but the engineering feat of dragging it from the Atlantic Ocean to its resting place in Chicago blew me away! Networld was also interesting.

That night, we had dinner at the hotel and met so many awesome families! Thank you guys so much for the great time! Mom also had the chance to talk to her CNCF handbook collaborators for the first time in person. I thought it was hilarious just how long they�ve all been working together across the internet, but never gotten together until now! She also introduced the handbook to the group the next day. The doctors presented many of the new treatments being developed and the parents there were a lot of discussions. I kept up as well as I could, but most of the technicalities were far above me. Plus, I was really nervous about my speech the next day. Even sleeping pills couldn�t help me get to sleep that night! Molly Hollway shared her story first. I can�t believe she�s only 14 years old�her presentation was just amazing! Way to go Molly!

My favorite part of the conference had to be meeting Anna O�Connor. Honestly, I�d been looking forward to it for a long time. I still find it hard to believe just how much she has accomplished under such dire circumstances. I even find it hard to say, �I know what she�s been through�. Because I don�t. July 4th marked her FIFTH CONSECUTIVE YEAR of treatment for neuroblastoma, and in that time she completed her college degree. Wow. If I�m a hero, she�s a titan. Saturday night, we drove to her friend�s house for a party. I got to meet a few of her college friends and we had an awesome bonfire! The next day we met up with our families at Anna�s church. After all that fun, I was sad to leave.

Next stop was Ohio. Lesa had been really looking forward to visiting the brand new Creation Museum that she and my mom previewed a while back while it was still under construction. Now, all the exhibits were completed�all state of the art as well. Everything from the creation of the world to its fall was exhibited, and it was just packed with visitors!

Tuesday, we reached my Uncle Mark and Aunt Debbie�s house in Virginia. The last time we saw them was eight years ago when they visited us in Minnesota. It was good timing too, because my cousin Daniel finished college this year and only had a few days before he moved to San Francisco! My family stayed at a nearby military base, but I wanted to watch the fireworks with my cousins� in Washington DC!!! We had a picnic near the Capitol, toured the Smithsonian Museums, hid from a rainstorm, walked around the Washington Monument and Jefferson Memorial� then watched the fireworks. What a way to spend the Fourth of July! I also met a few of Daniel�s college buddies and we really had a good time. It was even more crowded than it looks like in the picture!

Right now, we�re in New York, Visiting Aunt Cathy and Uncle Mike. It�s been so great catching up with family here! They have a beautiful house in Long Island, with an amazing �jungle� backyard. I�ll have to upload pictures if I get the chance. We walked around NYC and saw some really cool street dancers today. They looked like they had been breakdancing all day! There was so much to see, we almost lost track of time, and had to rush back to the train station before our train left for Long Island again. Tomorrow, my mom and I really need to visit the Sloan Kettering Cancer Center. We�ve heard so much about it, and I really want to visit the kids getting treated there. Dylan Hartung is one little guy I�ve wanted to meet for a while. He was also diagnosed with stage IV neuroblastoma.

In all the fun we�ve been having so far, however, I have to admit there is a slight bit of disappointment� I have a hobby of collecting key chains from every state I travel through and from the points of interest along the way. In the seven or eight states we�ve been though and all the museums� I was able to buy three so far. It seems all the gas stations have stopped selling them and the Creation Museum didn�t have them in stock yet.

My last road trip with my family� and I will have no way to remember it.

;)
-Erik

Sunday, July 1, 2007 9:54 PM CDT
Erik was AMAZING.

And that is a very unbiased mom's opinion. I am sure you believe me.

Erik FINALLY got to meet the AMAZING Anna O'Connor (WOW) and her beautiful and equally amazing family. We were so blessed to go to worship with them at their church this morning!

Sure wish we could have stayed longer to spend more time with all of them. SOON. We'll be back!!!

Meanwhile we arrived safe and sound and very tired to Wright-Patterson AFB in Dayton Ohio (where Paul got his master's degree at Air Force Institute of Technology in Computer Engineering and on one day off between classes Erik's little brother Karl was very politely born on a Sunday...) In fact our hotel "distinguished visitors quarters" faces the very hospital where he was born almost 18 years ago!

NO WORDS can describe the impact the NB conference had on me. This is truly a one-of-a-kind event. Never are parents given such a privileged to learn and interact with the brilliant minds at work to cure such a difficult disease. Never are parents of such rare diseases brought together to share from their hearts...treatment ideas as well as grief from losing children to this...no words really can begin to explain this.

Maybe Erik can.

Thanks for checking in!

Pray for Anna.

Blessings from Donna

Wednesday, June 27, 2007 2:35 AM CDT
We are leaving in 2 hours!!!

Oh man, I really hope the hotels we stay in have wireless internet so I can update everyone on our vacation as it unfolds. I'm also bringing my camcorder so we can get a video of my presentation and Niagara Falls! I tried to upload the last speech I gave back in January, but none of the video hosting sites liked the massive file. I wish the I had kept it under 10 minutes! Well, this time it will only be around 5 minutes. That shouldn't be too hard.

Pray for a safe journey!
~Erik

Tuesday, June 19, 2007 8:52 AM CDT
Yesterday we got the results from last week's visit to U of MN-Fariview for the catecholamines.

Last Thursday's numbers:

HVA = 2.7 (0-8 normal in our lab)
VMA = 3.3 (0-8 normal in our lab)

Two years ago at first relapse it was 19 and 69...

In January after second relapse and progressing on hu14.18-IL2 (and increasing bone pain) his numbers were 3.0 and 11.8

Then he had three rounds of IV irino and oral temo, and last chemo was March 23...scans then showed small amounts on PET and biopsies. No treatment since.

Now almost THREE months after last chemo he has such low numbers!

Halleluiah!

Next scans and bone marrow biopsy end of July.

But first, Chicago, DC, NYC, and Niagara Falls!

In August Erik is volunteering at Kamp KACE (where his onc and nurses from Fargo also volunteer) and has a two-week stint lined up to volunteer at Camp Sunshine in Maine end of August and September!

Go Erik!!!!!

Love,
Donna

Monday, June 18, 2007 2:17 AM CDT
On the way to the East coast for a family vacation, we�ll be making a stop in Chicago to attend the 5th NB Conference hosted by the Children's Neuroblastoma Cancer Foundation (CNCF). My mom and I both will give short speeches there in front of many parents and medical professionals from all over the country... so no pressure. ;)

I�ve been asked to talk about my experiences, and specifically, what the long term effects were to my body as well as my mentality. It�s every mother�s nightmare that their children will go through cancer and be forever traumatized by the experience--which isn�t too hard to imagine. Each case is different, but at least I can give the parents some hope. While the cancer definitely left its mark... through the scars on my body and the insecurity I sometimes feel, I still gained a lot more than it took.

It took away my job, but it gave me better values.
It took my hearing, but it gave me an appreciation for what I can hear.
It took some of my feeling, but it gave me more compassion for others.
It took my stamina, but it gave me a willingness to serve.
It took away a lot of fun I could have had, but it gave me a love for life.
It took my muscles, but it gave me a bigger heart.
It took my spirit, but gave me a stronger one in its place.
It took part of my life, but it gave me an experience I don�t regret.

Like I�ve said many times before, I�m glad it�s over, but I�m also glad it happened. I�m not sure the other families attending will see it that way--especially if they are in the middle of treatment. When I was first diagnosed, I couldn�t find one positive thing about it either. Hopefully, I can encourage all the families when I tell them that the nightmare will eventually fade from memory and it will not destroy their children�s lives. Most cancer patients just want to be normal and also don�t want their experience to �define� their lives. Here�s my view:

It doesn�t matter what cards you are dealt. You can still win if you play them right.
~Erik

Friday, June 8, 2007 8:45 AM CDT
I watched the sunrise this morning.

Even though I got home at 4am from the concert in Minneapolis. The �Tooth and Nail� tour came to Club 3 Degrees, so we got to see MxPx, Project 86, The Classic Crime (my favorite), Sullivan, and The Fold. After the show we went out to eat at Denny's, then I started driving home. By the time we reached Park Rapids, day was just beginning to break. I dropped all the guys off and headed for home--but then I had a sudden urge to watch the sunrise from Heartland Park. It�s been years since the last time I watched it. Sure, there have been plenty of days when I�m still awake when the sun comes up... but that�s usually because I�m working on a computer project down in my basement.

Well... it was cool. It also had me questioning though, just why people wake up early and sit outside in the cold to watch this. I had four layers of shirts on and I still wasn�t warm enough. Yeah, the changing colors in the sky are nice... but I guess without any real meaning to me, it wasn�t as captivating as it seems to be to some people.

As I sat there watching it, the significance just started coming to me. Most people seem to associate sunrise with renewal or beginnings. To me, it meant something else. I thought about how the dark and cold of night gave way to the light and warmth of day. A verse popped into my head:

�In Him was life, and the life was the light of men. And the light shines in the darkness, and the darkness did not overcome it.� (John 1:4-5)

Night doesn�t stand a chance against the day. No matter how dark a room is, if you turn on a light, it�s no longer dark. In reality, dark and cold don�t exist. They are only the ABSENCE of heat and light. Fill that absence with something, and it�s no longer empty.

Life is full of parallels. I think the same relationship between cold and heat exists between fear and faith. This means: that fear is also just the absence of faith, can only operate outside of faith, and doesn�t stand a chance against faith. Let�s carry on the analogy... what does that make the sun? Jesus Christ, just like in the bible verse.

The sun comes up, bringing heat and light, and gets rid of the cold and dark. Jesus comes, lifts up our faith, and destroys fear. As long as I�ve got my faith, I don�t have anything to worry about. I know what the sunrise represents to me now.

Victory.

Oh yeah, and notice how the sun rises every day, right on time? It�s been doing that for so long now; we stopped doubting it�ll be there tomorrow. Well, my God MADE the sun, so He�s even more faithful than the sunrise. Think about that. :D
~Erik

Sunday, June 3, 2007 2:01 AM CDT
I'm not alone.

I should be sleeping right now. The LAN party the youth group at our church put together started at 4pm on Friday and ended this morning at 7am. It took an additional hour to clean up the cables, routers, power cords, game systems, splattered food, and thousands of pop cans that littered the place. There was time for a quick nap at home, but I could barely focus on playing with my band at our service tonight. When I left I said I was heading straight to bed...

All I wanted to do was check my email. My mom said someone had forwarded a story to us that I needed to read (thank you SOOO much, Carol!). There are tons of stories I�ve heard that have lifted my faith and kept me strong in the trials I�ve faced. The ones that I really needed to hear at a specific time were sent to me by God... but this time, it was almost weird.

This time, it was my story played out in someone else�s life.

Nothing will make you feel more alone than when you�re facing a trial you think no one else is going through, or can relate to. That�s where doubt tries to sneak in. If nobody else wants to make the same decision, it becomes a lot more difficult to stick with. I�ve prayed many times for assurance that what I�m doing is the right choice and I�ve always ended up with a good feeling about it. This time it drove me to tears, thanking my God for the reassurance He just sent me.

Gloria Strauss is an 11 year old girl, who is also fighting neuroblastoma. Her story was written in the Seatle Times today (read it here)--not because of her condition, but because of her faith and the faith of her family. I�m not going to paraphrase it, because you NEED TO READ THIS.

One thing that really struck me about the article is that they included a bible verse that Gloria�s mother wanted to share. It�s Matthew 10:7-8. We�ve been covering healing in our bible studies, and that was one of our verses. It says, �As you go, make this announcement: 'The reign of God is at hand!' Cure the sick, raise the dead, heal the leprous, expel the demons. The gift you have received, give as a gift.� That�s what Jesus commanded his followers. Hmmm... same disease, same choice, same bible verse... I can only conclude that my God is so awesome and caring, He showed me that I�m not alone.

She is going to be healed. I�m healed. Our stories will speak to everyone who doesn�t believe that miracles happen, or don�t happen anymore. Don�t agree with me if you don�t want to. Just watch. Belief will follow.

The reign of God IS at hand!
~Erik

Thursday, May 31, 2007 8:09 PM CDT
Growing grass, spring rains, garden planted, flowers, graduation, lilacs, and even puppies!

What a glorious spring. We are praising God for His hand upon us. Erik is feeling well, and is very busy. We�ll know next week the results of the VMA/HVA (markers for disease). Karl graduated with honors from Minnesota State Community and Technical College with a degree in Computer Network Security. He is working with Paul (in our business PC Help). Lesa and I were guests of a dear friend to attend the preview week of the Creation Science Museum across the river from Cincinnati. It was INCREDIBLE! We also saw Harriet Beecher Stowe�s house and the Underground Railroad museum. We are planning our trip end of June to Chicago, Washington DC, and NYC to see family. Erik is lining up more kid�s cancer camps to volunteer at this summer, web-designing, and staying busy practicing and performing with his band Phoenix Awakening.

My parents are returning from a month in Europe this weekend, and we have some home school workshops planned for June. I am presenting college and career information. Lesa and I will continue our Greek class through the summer, in between vacation, camping, and a week of camp for her. Aron is happy about the warm weather, looking forward to days at the lake, and enjoying the adorable puppies! Paul is getting ready for cement to be poured in our garage, and keeping busy with everyone�s sick or uncooperative computers.

We have been devastated by the continual losses to this disease. Dear Penelope, Kendall, Bryan, Marielle, Landon, and many others will be missed. Others are suffering, with diminishing options, and so many have relapsed.

Please pray for our relapsed/refractory NB friends Lucas, Sam, Alex, Elesha, Emily, James, Austin, Paul, Nathan, Nick, and Nate...

Meanwhile, we are thankful for every day, and pray for sweet blessings in your life. Erik rejoices in the time he has to serve others. May we all have his attitude!

Praising our Lord Jesus,

Donna

Monday, May 21, 2007 11:25 PM CDT
URGENT!!!

Oh man I wish I posted this earlier, but I need everyone's help--and fast! It's not too hard... Shane Bernier is a little guy with lymphoblastic leukemia and he'll be turning 8 on May 30th. His wish is to break the world's record for the most birthday cards... 350 million! Here's his web site: www.shaneswish.com If you've ever wanted to do anything for me, send this guy a birthday card... or two... or ten. However many you can!

Mail it to this address:

Shane Bernier
PO Box 484
Lancaster, Ontario
K0C 1N0
Canada

Wednesday, May 16, 2007 11:55 AM CDT
SORRY ABOUT THE LACK OF UPDATE!!!!!!!

From MOM:

Erik has been SO busy he has not had a minute to update the past two weeks...although he keeps promising!

Right after he posted last time, he went to Club 3 Degrees in Minneapolis, (Christian club/church) http://club3degrees.com/sundays.asp
then spent the next day learning the new sound system with his band (now called Phoenix Awakening) and Firestarters, then packed in a hurry and rushed off to Wisconsin for Camp Sunshine. He had "the best week of his life" so my prayers were answered above and beyond all I asked! He�ll have more to say about Camp!

Immediately after getting home he went to both services at Faith Baptist, prayed for a man's daughter who was in an ATV accident (her sight is jeopardized) and has several others to meet with and pray for�then went to Firestarters Sunday night.

He is fasting and praying for three days for a suicidal girl and for �his health decisions� and he went to practice yesterday with his band. Tonight they have Bible study. They are performing Sat and Sunday night.

Tomorrow he is working on updating their new website, and also has a very dear friend�s website to work on! He loves this stuff.

My turn to say something about Erik�s decision to stop treatment. I can�t tell you how much I appreciate the incredible outpouring of support for him and all he is going through. There are no easy or obvious answers to what he should be doing for treatment. Like he said, there is nothing that actually holds a promise of cure. His best chance medically speaking is that the disease can be held down for a while as a chronic condition until it becomes resistant to all agents.

My own question is: could it be that God has miraculously used this relatively mild chemo combination to knock down the cancer to almost nothing? I personally know of a couple cases where this combo has worked surprisingly well, at least temporarily. Dr Neglia wanted him to get just three more rounds to eradicate (or more accurately, to knock the NB down below detection) the little bit that is left, then go on an oral chemo. I have to confess that sounds good to me! I wish he would do that. Dr Neglia's exact words were "can't you just suck it up and do just three more rounds?" and Erik admitted this chemo "isn't that bad"...(he has been through much worse--he has had 20 rounds of chemo altogether, and only three were "low dose" mild chemo...)

But what do I know? Is this my decision? I do not have to deal with the effects of chemo. So that is very easy for me to say.

Erik has so much he wants to do, I don�t blame him for wanting a full life, now.

He will have HVA and VMA checked the end of June, and scans and biopsy in July.

If he changes his mind, he can start any time. If he wants to wait until the end of June or July to decide about treatment again, he can. My prayer is that the disease does not progress in the meantime, because he will not be able to follow Dr Neglia�s plan of just three more rounds�it will be more like starting over.

So please pray with me for healing, wisdom, and clear direction for Erik!

And please pray with me for precious and brave little Penelope who is experiencing unimaginable suffering�
www.caringbridge.org/ny/penelope

Blessings to you all!!!
Donna

Wednesday, May 2, 2007 10:24 PM CDT
I'm six feet from the edge and I'm thinking...

Old song... but new meaning for me.

Funny how people always talk about strength. You've heard the questions before. Probably came up with your own answers. "If someone pointed a gun to your head and asked if you believe in Jesus, what would you say?" "Would you trust God enough to jump off a cliff?" Seriously, think about it. A gun is to your head and someone is staring you in the eyes. You can hear rocks slipping off the edge and crashing hundreds of feet below. What are you going to do? The truth is you'll never know until you're there. Doubt will hit you like a train at 250mph. It will seem all too easy to back down. Facts will change in the moment. What you were dead sure about just hours ago will seem uncertain. Why am I being so dramatic? Because I still can't believe what I just did.

I just jumped off that cliff.

My doctor saw me at 10:00am today. I recorded the conversation we had, but out of respect to him, only a select few will hear it. You can probably guess how most of it went anyways. Dr. Neglia is an amazing doctor. I don�t think I could have ended up with better. Not only is he thorough in his approach to cancer treatment, incredibly knowledgeable about neuroblastoma, and (probably my favorite) performs completely painless bone marrow biopsies, but he also cares a lot about me as an individual.

That�s why he was upset when I told him I�m stopping treatment. He told me felt the disease would start growing again without medicine. He said there is probably still cancer in there now. The scientific mind will say play it safe and keep medicating until you�re sure the disease is gone. He probably think�s I�m throwing my life away. He might even think I�m insane, or at least confused. Blind.

Maybe I am blind.

To be honest, I have no idea what I got myself into. This isn�t �science� as we know it. Nothing is really certain�but that�s just what comes with cancer. It will pop up randomly, and each case has different responses to the same medicines. You can start out with a tiny amount of disease that never responds to anything and slowly kills you, or you can have a ton of disease and it gets wiped out immediately�and they�ll never even call it �gone�, they call it a remission. That means they�ve been testing for a while and still don�t see it. It�s not something you see all the time or feel all the time. It�s hidden. It was hidden in my body for 13 years, and showed up after everyone thought I was clean long ago and had practically forgotten about the whole thing. The doctor who gave the diagnosis didn�t even believe it. He had to check three times. That�s just how life is. We can�t be certain of anything in this world.

What we really need, is to be certain of what is NOT of this world.

You need to try and put yourself in my shoes to understand that statement. I was diagnosed with stage 4 (high-risk) neuroblastoma back in 1991. That�s bad. After two rounds of chemo with no effect, the doctor told my parents bluntly that they didn�t think anything was going to work. I should have died, but I didn�t. I relapsed in 2005 with so much neuroblastoma in my bones; they had trouble finding normal cells. That�s also bad. I should have died just from the dangers of the second BMT, but I didn�t.

Finally, I relapsed yet again at the end of 2006. This isn�t bad anymore. It�s off the charts. I should have been dead LONG ago. Treatment shouldn�t have made ANY effect at all. There should have been NO hope whatsoever, and statistics will back all that up. If I had anything in the world to be certain of back then, it was that I was going to die.

But I�m still alive.

How many people can honestly say they are not afraid of death? I�m sorry, but you�re never going to know for sure until you are staring it in the eyes. And I believe the end of fear is the beginning of faith.

Am I insane? Read this page over again. I�d be insane to believe the medicine has the ability to cure me. Am I confused? No. I am secure in my faith; that I don�t need to fear anything because my savior Jesus cares for me. Am I blind? Absolutely. Its common sense not to look down when there is a possibility of falling. Looking down will give you something to fear. In the same way, if you meditated on death all day, it would probably start to freak you out too. Try it. I mean, none of us know the future. It�s not predictable�there is no robotic system to anything. It seems so random sometimes, yet there�s also an underlying symmetry to everything. Probably because it�s all controlled by a supreme God who is very much alive, and not anything we can figure out. If we could honestly figure God out, He wouldn�t be a God would He? I just trust that He is watching out for me. Leading me.

Am I throwing away my life? My life doesn�t belong to me. All have sinned, and that includes me too. Jesus died for my sins and gave me eternal life. In return, I dedicated myself to Him. A living sacrifice. How can I throw away my life when there�s nothing there to throw away? The Bible says I died with Christ. Believe me, I needed that. The old life I had before now was trashed. I took control and it was a disaster. People have a problem accepting God because they feel tied down by Him and want to be free. I wasn�t free. It wasn�t until I realized I couldn�t handle my life on my own and asked Jesus to be my master that I was set free. Still don�t get it? Being a servant and being free does sound like opposites, so I�ll try to explain even further. I�m not talking about the freedom to drink all I want, swear all I want, have all the sex I want, and wind up hollow and dead with no hope. Not the freedom to disobey any rules just because I feel like it. I�m talking about freedom from fear. Freedom from death because I�m going to still be with God after this life. The freedom and joy that comes with asking Jesus to come into your heart. I still make my own choices everyday�today is a perfect example. I could have continued treatment, but I chose to stop it and trust Jesus with my life. I choose to serve Him because God is infinitely more faithful than we are.

Lastly and most importantly, I am free from condemnation. That means I can�t screw this thing up if I tried. There�s no little secret that�s going to save me from cancer. I gave up my life, remember? That�s the important part. That�s what we need to focus on. I trust in my God. He has full control of every aspect of my life. People seriously make death out to be a lot worse than it really is.

To live is Christ, and to die is gain.

We are all six feet from the edge, and six feet ain't so far down. So I�m not going to worry about it. I�m going to keep living until my work here is done. I should get busy�I�ve got a lot to do.

Love you all,
Erik

Tuesday, May 1, 2007 2:26 PM CDT
Yeah, I know I should have updated yesterday... but I was pretty tired, yet also really busy--giving praise to my Lord Jesus for His mercy in healing me!!!

Here's the deal... I had my last scans over two months ago (that's when I broke the news of my healing). Those scans showed grey where there used to be red all over the place (red meaning cancer)... yet three spots--my right iliac, left femur, and right ischium, had a 'brightness factor' of 3.1, 4.3, and 4.8 (SUV) respectively. I recently found out that was just a little too bright to indicate normal bone marrow regrowth... unless it was my God making them recover faster. :D I've been considering a complete stop on my treatment for a long time now... and those of you who have personal experience with cancer really know what a leap of faith that is... so I wanted a sign.

I wanted my platelet count to be 200. That made for one very interesting day at the clinic, where I asked my very kind and understanding nurses to draw my blood three times, certain I was going to get an answer that day. The first draw had the platelets at 63, then 57, then 54. I�m not going to lie, I was a little disappointed. I wanted God to answer me my way about stopping treatment� but I�ve been learning something very important about Him. Sometimes He likes to answer prayer His own way. I really didn�t want another round of chemo� I�ve had 20 rounds already and its one thing you just can�t get used to. So instead of my platelets reaching 200, they were kept below the acceptable level for chemo.

Which brings me back to the latest results. I�ve only been able to get one round of that low-dose chemo in the last two months. Scientifically, that shouldn�t have done anything. Actually, the cancer SHOULD have progressed�there should have been a few new spots. That�s just what normally happens.

The cancer did not progress. No new spots. The spot in my right iliac was gone. The brightness factor of the left femur and right ischium is now 2.8 and 2.2. The biopsy showed scattered �focal cluster rosets�, but they couldn�t even give it a percentage. I see my doctor tomorrow, and I�m bringing a tape recorder. There are a lot of people who wanted to hear how our talks go, so I was kind of hoping he will let me record it.

-----------------------------------------------------------------------------------------------

Got one more miracle for you--last Sunday, I was heading back from Firestarters in the Toyota Camry� and� let�s just say it�s such a smooth ride, it�s easy to forget how fast you�re going. I was mortified when I got pulled over with three other friends in the car. We had snacks all over the place, I was really nervous� and I guess my pupils were constricting a little slow that night (might be from meds--I don�t know). So the officer asked me to step out of the car, checked my pockets, and directed me over to his car. I had no clue why, and he started firing a bunch of questions about who I was, where I came from, and where everybody was going tonight. He also asked why the address on my drivers� license was different than my current address. I explained that I had just moved from the cities where I was getting treatment for cancer. After that he eased up a little and told me he thought I had been smoking pot. That explained the odd treatment. Finally he asked my why I was so nervous, and I told him this was going to be my first ticket ever so of course I was nervous. �You�re expecting a citation from me tonight?� �Yes sir, I am.� �Go ahead and wait in your car.�

I got back and we decided to start praying that I wouldn�t get a ticket. I knew I deserved one, but I didn�t really want one. The officer came back and told me, �This is a warning for driving 70 in a 55mph zone and for having the wrong address on your drivers� license.�

Does this mean I can go as fast as I want to and pray off all the tickets? Absolutely not. Jesus just likes to remind me of how powerful He is in very interesting ways.

And to obey the speed limits. ;)

Monday, April 30, 2007 9:28 PM CDT
YESSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS!

God is so merciful!

Scans were actually BETTER than end of Feb!!!!!!!!!!

Biopsy did show small amounts of NB, but the fact the scans improved even MORE is very good news. Things are definitely going in the RIGHT direction!

THANK YOU JESUS!!!!!!

Erik will update more later....

THANK YOU DEAR FRIENDS FOR PRAYING!!!!!!!!!!!!!!!!!!

WOW!!!!

Love Donna

Saturday, April 28, 2007 10:52 PM CDT
No news yet.

We saw Dr Neglia early on Thursday morning for the biopsy, and he decided he wanted us to come back next week to see him after all the final results are in. Erik had the rest of the tests, and we came home. I had a bad cold so we didn�t get to see Nathan and Pam. I expect to hear something by phone on Monday�to give us heads up.

We sure appreciate your prayers for good news!!!!

Blessings,
Donna

Monday, April 23, 2007 2:20 PM CDT
Please pray for continued good news for Erik!

He decided to quit chemo, which was confirmed by the fact his platelets were too low for four weeks to get chemo anyway...he is now off all meds, and feeling well.

He has bone marrow biopsy and PET/CT on Thursday (April 26) and we will enjoy another visit with Pam and Nathan Walz Thursday evening since Nathan has appointment at Children's Friday morning!

Thank you for your prayers.

Glory to God!

Love, Donna

Tuesday, April 17, 2007 6:22 AM CDT
Here's the speech that I shared at my church last sunday...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Many of you know me already. You might even remember that I was here just a little over two years ago, asking for your support to serve as an intern with Casas por Cristo, building houses for the homeless in Mexico. That was the spring of 2005. A lot has changed since then. I did not make it to Mexico that summer; instead I was diagnosed with recurrent Neuroblastoma cancer two days before my plane flight. They called it �recurrent� because I had it 13 years before then. No one ever thought that it could come back so late. I started my chemotherapy treatment, and I surprisingly responded very well. Even better than the first time. I had a second bone marrow transplant in November 2005, and I thought that was going to cure me, just like it had in 1992. It took me four months to recover from that transplant, after which I found work at Best Buy. For a brief while, life stabilized. I was married, living in Bloomington, MN, and had a great job. It wasn�t over yet, though. Things were going to get a lot worse. My marriage deteriorated, and I relapsed just one year after the transplant. More treatment made it impossible to keep working at Best Buy as well, so I had to quit the one positive thing in my life at that point.

Now I knew how people with terminal illnesses felt. I had never been so depressed and confused in my life. Statistics didn�t give me any chance in the world. You know it�s bad when the doctor brings up the option of doing nothing. I really believed I was going to die. Why was all this happening to me? I thought God had called me to go to Mexico that summer. I didn�t know if there was something I was doing wrong that had driven Him away from me, or if God had even been with me in the first place. Whatever the reason I got cancer, I knew my heart must not have been ready to serve Him in Mexico. My prayer life was sporadic at best; and bible or devotional reading virtually non-existent.

The cool thing is that God is faithful even when we�re not faithful. I prayed once that God would use me in His service. He remembered, and knew exactly what it would take to prepare my heart. He led me back home, gave me a strong, God-fearing group of friends, and brought me to the Firestarters, a praise and worship group in Ottertail, MN. That was the first time I had been in a room so full of the Holy Spirit, I could feel it. My heart was broken and I cried out to God for help. A couple people asked if they could pray for me, and I told them my story. At that point I still was sure I wasn�t going to get better, however. They explained that if I had faith I could be healed. It took a couple of hours of discussion and prayer, but I slowly started to get my hope back again.

As my faith increased, I started to believe God would heal me. Not only did I believe I was going to be healed, I got the news from the doctor, that my formerly cancer- filled bone marrow was essentially clear, a response that was totally out of proportion to the small doses of chemo I was given. I needed to witness to the people in the waiting room I had been in. That waiting room audience can be described as a group of bald, miserable people who never talk to each other. I had never witnessed to complete strangers like that before, and it took a quick phone call before I had the strength to go in there. When I finished, three people said "praise God", and I told them that God gets all the glory for it. The two receptionists thanked me for sharing my story, and one guy shook my hand.

You would think that my miraculous healing when I was seven years old would have been enough to keep me close to Jesus the rest of my life, but the problem with being human is that we forget what God has done in our lives. We keep asking to see Him work, but we don�t realize that He is working all around us. Now that I realize that it�s only by His grace that I�m still alive and His power that my body is held together, I have a daily reminder that I need to serve Him. (Deut 8:11-17).

The other thing I�m convicted of now, is praising Jesus in the hard times as well as the good times. We might not ever know the answer to �why�, but there are times when the question is irrelevant. When Job asked that same question, the Lord responded simply with, �Look who I Am�. Like my story, God has a plan for all of us. We might not see all the way down the road, but He is always faithful.

Saturday, April 7, 2007 10:10 AM CDT
Update from Mom:

Thanks so much for continuing to check up on Erik!

I have renewed sympathy for Erik and all those who are on chemo for what seems to go on forever...just having a minor virus hang on for a week or so, I felt lousy. How awful to wonder if you'll ever feel good again. Erik NEVER complains, just keeps going and is so excited about what God brings him each day...yet I was miserable and had a very hard time focusing on anything but how lousy I felt. I am very humbled by his attitude and perseverance, and by the many little fighters we pray for constantly.

Erik wants SO much to be in an environment where he can counsel kids with cancer all the time. His heart is longing to realize a purpose for all of this. He talks about it all the time. We don�t know what treatment is in store for him, and he is praying for VERY CLEAR direction from God on what he should do, if anything, for treatment. PLEASE pray for him to know what he should do for treatment.

He gets counts checked on Monday to see if he can start the fourth round of irino/temo. If so, he'll have scans and biopsy again April 26.

I am hoping we can get him to Maine to work at Camp Sunshine there for two or three weeks this summer, but of course it is dependent on if he is still getting chemo or something else. Camp Sunshine in Wisconsin is scheduled for May (and it is the same week Karl graduates so we�ll have to leave a tad early�)

Erik has been working on his �Faith Story� to give at our church next week. It has been hard for him to narrow down a message because he has SO MUCH to say!

Meanwhile, it is such a joy for me to see him seeking God with everything he�s got, and longing to know what God wants him to do. That is a good place to be.

I pray we each realize Healing and Resurrection in our lives, and praise the God who rescues us.

Blessings,
Donna

Please continue to pray for little Penelope and her precious family who are experiencing unspeakable heartache�
www.caringbridge.org/ny/penelope

Monday, April 2, 2007 3:09 AM CDT
Oh man! I just got back an hour ago from our first performance in Staples. Somehow, our band managed to squeeze all our equipment (drum set, 5 guitars, electric piano, amps, stands, cables, list goes on...), and our 7 persons (our good friend Ray came with us) into 3 vehicles. Ben and Joanna met us there, then we set up all the equipment. That really is a lot more work than it looks! I thought I lost my AC adapter when I first unpacked my stuff, but Dave brought it for me. We played through all the songs and then had a little prayer meeting.

I didn�t really know what to expect� a lot of the guys were a little stressed about the whole thing� ok maybe a lotta stressed. A lot of unexpected things had come up. On top of that, we haven�t really had lots of time to practice. I was waiting on my keyboard and accessories for the longest time� but I wasn�t that nervous. We were stepping out in faith that this was what God wanted us to do, so I was sure He was going to take care of us.

And He did. We� lets see, how should I put this� we have a lot of room for improvement�but the kids we were playing for worshiped from their hearts anyways. Dave gave his speech and asked people if they wanted us to pray for them. A lot of kids came forward�even ones that the pastor told us later that he�d been working on for a long time. To guys approached me and asked me to pray for them. I really admired their boldness. I remember what high school was like� no one wanted to step up to the front because they were worried about what others might think. It wasn�t the cool thing to do. That didn�t stop these guys. That church had been praying for its youth group for a long time, and tonight, they felt like they were moving in the right direction.

So it wasn�t about how well the band played. It was all about where our hearts were and our faith that this was where God wanted us. Strengthening, yet humbling at the same time. That doesn�t mean we�re not going to practice though! :D

Here are the band members for Phoenix Rebellion:
Dave - electric guitar/vocals
Ben � electric guitar/lead vocals
Jordan � acoustic guitar/lead vocals
Josh � bass guitar
Ezra � drums
Erik � keyboards
Amy � vocals
Joanna � vocals

Here's some art I made:

Wednesday, March 28, 2007 2:29 PM CDT
Update from MOM:

Third round of the irino/temo combo is done (last Friday), and counts are surprisingly decent (PLT 103 yesterday! and ANC 1100, HGB 10.5). Erik is going to the dentist today for the first time in a VERY long time! He is staying plenty busy now that he does not have to go to the clinic every day, and we are all hoping his counts prevent him from getting chemo on schedule again, so he gets a nice break. I hope that is not unwise to hope for! He�ll be reevaluated again after the next round, whenever that happens. He is still praying about stopping treatment, or what if anything he should do after this chemo.

During the second week of Erik�s chemo, I went to Colorado to �help� my parents, brother, and sister with my grandparents� house�a somewhat melancholy affair. Like Erik said so well in a previous post, it feels like the end of an era, and that is hard to accept. I have more than 40 years of memories associated with my grandparents living there. It was wonderful though to hang out with my �nuclear� family again�how many 47 year olds still have mom, dad, sister, and brother to do that with?

The rest of the Ludwinskis are keeping busy too. Lesa and Aron have a play to perform with 30+ other home school kids this week, Paul is fixing computers, Karl is looking forward to finishing school in 6 weeks, and I have an ACT prep class to teach this week.

We are abundantly blessed. Please keep our little friends in your prayers--especially Penelope and Kendall, both in NY. They are both experiencing pain and running out of options...may God hear and answer our pleas for them.

Love Donna

Monday, March 19, 2007 12:50 AM CDT
YAY! It's my birthday today!!! How should I start year 22 off..... hmmm... I know! I'll go get some CHEMO today!!! HAHA You gotta stay positive about this stuff�it�s the only way to get through it. :D

I don't know... I had my 21st birthday already. What comes after that? 22, 23, 24, 30, 40, 80.... 22 isn't quite so monumental so I think I'll get my chemo today and then just relax or go out to eat with some friends. Wednesday I�m going to a concert though� Relient K and MAE will be there so it should be a good time! It�s somewhere down in the cities. A bunch of kids from Park Rapids are going so the road trip alone should be fun! It�s been a while since I did a road trip with a big group�. You never know what can happen when a bunch of people get together to worship God! Speaking of which�

Last night was pretty intense. I�ve been going to the Firestarters meeting ever since I moved to Park Rapids (you might remember it from the January 24 journal entry). They do a lot of praise, worship and prayer. Just amazing things happen there every time! (They also hosted this dream interpretation seminar March 9 and 10 which was incredible!) Way back in January, when I was pretty convinced that after two relapses I wasn�t ever going into remission again, I was brought there and people prayed for me and reminded me that God could still do a miracle in my life. That and one other meeting at Faith Baptist Church was my first introduction to �intercessory prayer�. Two months, an awesome healing, and much more praying later� I�ve been asking God to give me a sensitive spirit. I want to have a healing ministry and if anyone is in pain or needs prayer, I want to be able to feel it.

So it happened last night! I was in a group of people praying and I felt a pain in my back. It was there for just a second then was gone. I remembered back to what my friend Ray told me, about how the Holy Spirit can make you sensitive to the needs of others. I didn�t know what to do about it though! Luckily, Pam (one of the leaders) was nearby and I told her. She told me I needed to ask if there was anyone there that needed prayer for their back. Not just anywhere on the back either�I felt it specifically along my spine between my shoulder blades. I didn�t know what was going to happen or if I was really getting some kind of message at all� but a lady came up and said she had been having pain in that same spot. I got to pray for her and it was incredible!

Things like that happen every time. All the leaders there seem used to it now� It�s just so awesome when you can see God�s power move like that!

Well gotta get chemo now� hope you guys have a great day! :D

Monday, March 12, 2007 4:18 PM CDT
Chemo it is.

ANC is 900, and platelets are 85, so that qualifies, barely. Dr Neglia decided to go with a full dose.

I suspect next Monday�s counts will be too low for the second week of irinotecan.

Pray for a good week for Erik. He was pretty disappointed today�he REALLY doesn�t want any more chemo. Who can blame him? He has been going full steam for three weeks having a blast with the guys in the band, Bible study group, and going to Firestarters worship center. He spoke at my sister�s church yesterday, and he shared from his heart how his reason for getting up in the morning is to know God and to serve Him. It was great.

He has a concert to go to next week. Perhaps his counts will be too low for chemo next week, and he�ll be able to go! He also turns 22 on Monday! That would be a nice birthday surprise�to skip chemo next week!

Praying for all our little friends with cancer, and for outrageous blessings in your life!

Donna

Saturday, March 10, 2007 2:40 PM CST
Update from MOM:

Erik�s had his counts checked yesterday, and they are still low after three weeks off chemo (he is supposed to have only one week off).

Erik is praying if God doesn�t want him to have anymore chemo, God will make it OBVIOUS (please pray with us!). His platelets are up a little (77, just high enough) but his ANC has been hanging at 500-600 range the past couple weeks. The good news is no fevers at all! His ANC has to be 750 to start next Monday. So if it is, his doctor wants him to get 75 percent dose of both IV irinotecan (two weeks) and oral temozolomide (one week).

My concern is that having counts continuously falling since Jan 15 when he started the last two rounds, could mean that even with a slightly reduced dose, he could become transfusion dependent for months and experience prolonged neutropenia.

His doctor has decided against any more stem cell harvests for now. Cytogenetic abnormalities showed up in his marrow (hopefully transient), and collecting after two myeloablative treatments is charting unknown territory. It is also much harder to get a decent harvest after low-dose chemo.

So please pray for God�s direction for Erik.

Otherwise he is feeling GREAT and God is doing a MIGHTY work in his life! WOW. I wish you all could see him and talk to him. He is seeking God with all his heart, and God is showering blessing upon blessing in the spiritual realm!

PRAISE GOD!!!

Meanwhile we ask you to please pray fervently for our little friends who are suffering so terribly, and fighting so very hard against relapse or resistant disease�Penelope, Kendall, Elesha, Nathan, Marielle, and many many more...

Glory to God,
Donna

Thursday, March 8, 2007 5:45 PM CST
EVERYBODY!!!

You have to watch this TV interview with Dylan Hartung's family! It is so touching... they are such a strong family!

Part 1
Part 2
Part 3
Part 4

For more info:
Dylan Hartung's website
Dylan Hartung's myspace

Thursday, March 1, 2007 9:36 PM CST
Wow! My little sister Lesa just showed me a poem she wrote yesterday and she said I could share it with everybody...

Cancer is a horrible thing,
That only brings pain and suffering,
But as funny as it may sound
When it came around,
For my brother it was a gift.
A gift Jesus did lift.
It taught him the important things in life
And he felt no strife.
My love for him shines galore,
But God loves him much, much more.

That was really deep for an 11 year old--Thanks Lesa!!! That was so beautiful! I love you so much!

Thursday, February 22, 2007 11:33 AM CST
(See Mom's version below)

We met with the doctor today to go over the scan results... and wouldn't you know it?

I'VE BEEN HEALED!!!!!

Mom will fill in with the technical details (she always does), but the sample he took out had nothing in it! This is nothing short of a blatant miracle. Seriously--think about it... they told me in 1992 they didn't think I had a chance, and I relapsed TWICE since then. Throw out statistics, disregard studies. God gets ALL the credit for this one, and I am so grateful that He healed me.

The story doesn't quite stop there... a while back I had a feeling that once I heard the news that I was healed, I needed to go into the "maroon" (nuclear medicine) waiting room and share my healing with everyone. It was a lot harder than it sounded at first... I got up to the door, pulled a 180, and sat down across the hallway. I had to call up some spiritual support on my cellphone before I was ready to go in there. I was really nervous--never did anything like this before, but I made it in and asked the receptionist if I could make an announcement... I expected her to say no. I expected the people sitting there to be annoyed. I expected massive embarassment--but here's what happened... I walked to the front of the room and asked for everyone's attention. Everyone stared at me. I told them my name, that I had a horrible neuroblastoma prognosis, and relapsed twice. I said I had just gotten my scans here--they were clean, and I wanted to share some hope with everyone here. They all applauded. Three people said "praise God", and I told them exactly--He's the reason I am healed and that He gets all the glory for it. The people and the two receptionists thanked me for sharing my story, and one guy shook my hand. So that's the second thing God did for me today--there's no way I would have had the strength to stand up and share with everyone there if He wasn't there with me... and He gave me a nice audience :D

Thanks everybody! Keep your faith up because nothing can stand before our God!
~Erik

Mom's technical addendum:

Yes, Erik has officially had a DRAMATIC response from two rounds of low dose chemo (irino and temo)! The bone marrow is clear (aspirate and preliminary solid biopsy). Even if a rare cell shows up on the final stain, that does not diminish the fact it is a phenomenal response (yes, miraculous!), because last month the right biopsy contained SEVENTY PERCENT NB cells. The PET/CT did show some tiny bright spots remaining in his pelvis and femur, and Dr Neglia said it "could be recovering bone marrow" since his entire pelvis was completely loaded with disease last month. But since it is impossible to know what the little remaining bright spots actually are (PET is non-specific for NB), a cautious oncologist will treat it as if it is disease, since we all know even undectectable disease causes relapse and is typically treated in such a case as this. His spine was read as normal (last time it was completely lit up from top to bottom). Bone scan did still show the same two spots (skull and pelvis) BUT the bone scan takes a long time to clear because it will also show healing bone. Urine catecholamines were not back yet, but expected to be normal since last month they were only slightly elevated with clear progression (Nov-Jan).

This is amazing considering a paper was just published (11/2006) on this chemo combo for NB, and only 3 out of 17 kids with progressive disease had any response. They also received irinotecan 50 mg/m2/day and temozolomide 150 mg/m2/day for 5 days and Erik only had 10 mg/m2/day for 10 days and temo 100 mg/m2/day for 5 days (significanly lower dose) AND the kids received a median of 5 courses and Erik only had 2.

Erik's platelets are low (50K) and ANC only 500, so no chemo next week. We are thinking a two week on, two week off schedule will be much better for Erik too, rather than two weeks of chemo and only one week off. After two more rounds, he'll be evaluated again.

Even Dr Neglia was excited (a very calm person by nature...) he said that a clear bone marrow was better than any of us could have hoped for!

What a great day!!!!!!! Praise God!!!!!!

Additional note about the "Waiting Room Announcement"...

Erik has had 20 nuclear medicine scans (bone scans, PET/CT, and MIBG) there in the past 18 months and spent at least 50 hours in that waiting room. It is huge, always full, with a lot of bald people (big and little) and very long faces. I have never seen anyone engaged in conversation. That is the background so you can understand why he felt compelled to share his good news in that particular place...

Thursday, February 22, 2007 11:33 AM CST
We met with the doctor today to go over the scan results... and wouldn't you know it?

I BEEN HEALED!!!!!

Mom will fill in with the technical details (she always does), but the sample he took out had nothing in it! This is nothing short of a blatent miracle. Seriously--think about it... they told me in 1992 they didn't think I had a chance, and I relapsed TWICE since then. Throw out statistics, disregard studies. God gets ALL the credit for this one, and I am so gratefull that He healed me.

The story doesn't quite stop there... a while back I had a feeling that once I heard the news that I was healed, I needed to go into the "maroon" waiting room and share my healing with everyone. It was a lot harder than it sounded at first... I got up to the door, pulled a 180, and sat down across the hallway. I had to call up some spiritual support on my cellphone before I was ready to go in there. I was really nervous--never did anything like this before, but I made it in and asked the receptionist if I could make an announcement... I expected her to say no. I expected the people sitting there to be annoyed. I expected massive embarasement--but here's what happened... I walked to the front of the room and asked for everyone's attention. Everyone stared at me. I told them my name, that I had a horrible neuroblastoma prognosis, and relapsed twice. I said I had just gotten my scans here--they were clean, and I wanted to share some hope with everyone here. They all applauded. Three people said "praise God", and I told them exactly--He's the reason I am healed and that He gets all the glory for it. The people and the two receptionists thanked me for sharing my story, and one guy shook my hand. So that's the second thing God did for me today--there's no way I would have had the strength to stand up and share with everyone there if He wasn't there with me... and He gave me a nice audience :D

Thanks everybody! Keep your faith up because nothing can stand before our God!
~Erik

Sunday, February 18, 2007 6:10 PM CST
FROM ERIK:

Sorry everybody!!! We should have listed the scan dates a long time ago, but we will be leaving tomorrow (Monday) and here is what's on the menu:

[Tuesday]
Bone Marrow Biopsy (7:00am)
PET/CT (12:00pm)

[Wednesday]
Injection (8:30am)
Bone Scan (10:30am)
Pentamidine neb (12:00)

[Thursday]
Dr. Neglia (8:30am)

After our meeting with Dr. Neglia-where I am confident he is going to tell me no cancer is to be found ;D-we will leave from the cities later after a visit to the Science Museum and dinner with Nathan Walz and his mom! Sounds like fun, fun, fun! Pray for me everybody!!!

-----------------------------------------------------------

Also a Vicky, a friend from the UK, found this interesting bit of news... I'll post the article she found (link to article at the bottom of the page):

"Scientists Cure Cancer but no one takes notice..."

EDITORS NOTE:

Since the original publication of this article we have been inundated with responses from the public at all walks of life. It is important to note that research is ongoing with DCA, and not everyone is convinced it will turn out to be a miracle drug. There have been many therapies that were promising in vitro and in animal models that did not work for one reason or another in humans. To provide false hope is not our intention. There is a lot of information on DCA available on the web, and this column is but one opinion on the topic. We hope you will do your own research into the situation. So, we have added links to resources at the end of this column. If you are arriving here form a linking website like Fark, then those links will not appear because they tend to grab only the text. For those visitors, here is a link to the original research: www.depmed.ualberta.ca/dca

END NOTE

Scientists may have cured cancer last week.

Yep.

So, why haven't the media picked up on it?

Here's the deal. Researchers at the University of Alberta in Edmonton, Canada found a cheap and easy to produce drug that kills almost all cancers. The drug is dichloroacetate, and since it is already used to treat metabolic disorders, we know it should be no problem to use it for other purposes.

Doesn't this sound like the kind of news you see on the front page of every paper?

The drug also has no patent, which means it could be produced for bargain basement prices in comparison to what drug companies research and develop.

Scientists tested DCA on human cells cultured outside the body where it killed lung, breast and brain cancer cells, but left healthy cells alone. Rats plump with tumors shrank when they were fed water supplemented with DCA.

Again, this seems like it should be at the top of the nightly news, right?

Cancer cells don't use the little power stations found in most human cells - the mitochondria. Instead, they use glycolysis, which is less effective and more wasteful.

Doctors have long believed the reason for this is because the mitochondria were damaged somehow. But, it turns out the mitochondria were just dormant, and DCA starts them back up again.

The side effect of this is it also reactivates a process called apoptosis. You see, mitochondria contain an all-too-important self-destruct button that can't be pressed in cancer cells. Without it, tumors grow larger as cells refuse to be extinguished. Fully functioning mitochondria, thanks to DCA, can once again die.

With glycolysis turned off, the body produces less lactic acid, so the bad tissue around cancer cells doesn't break down and seed new tumors.

Here's the big catch. Pharmaceutical companies probably won't invest in research into DCA because they won't profit from it. It's easy to make, unpatented and could be added to drinking water. Imagine, Gatorade with cancer control.

So, the groundwork will have to be done at universities and independently funded laboratories. But, how are they supposed to drum up support if the media aren't even talking about it?

All I can do is write this and hope Google News picks it up. In the meantime, tell everyone you know and do your own research.

PLEASE READ THE EDITOR'S NOTE AT THE TOP OF THIS COLUMN, AND PLEASE CLICK ON THE LINKS TO OTHER DCA RESOURCES LISTED DIRECTLY UNDER THIS COLUMN.

This is a column of opinion written by Printz Executive Editor David McRaney. Comments can be sent to printz@usm.edu

Link to the article...

HERE"S ANOTHER ARTICLE JUST LIKE IT

Friday, February 16, 2007 10:37 AM CST
Quick update from MOM:

We are disappointed we can�t go to the funeral for my grandfather (visitation today, funeral tomorrow morning), but it can�t be helped. Erik has his last chemo today for this round, and next week has biopsies, PET-CT scan, bone scan, pentamidine breathing treatment, and consult with Dr Neglia.

He has felt sicker from this round of chemo, but the good news is his weight is gradually increasing! Six months ago he was down to 139 lbs, and now he is holding pretty steady at 150. That is encouraging! He had lost 40 lbs after transplant (11/2005).

Please pray for miraculously good news next week.

Please also pray for our little pint-sized warrior-friends who are battling this dreadful disease and their parents with terribly hard decisions to make:
Penelope
Elesha
Austin
Paul
Kendall
Alex
Sam

and a long long list of others�.

Blessings to you and yours!
Donna

Friday, February 9, 2007 11:30 PM CST
Grandpa Jake passed away last night. Feb 8th, 8pm. Grandma said he went very peacefully. I'm really glad for that. He seemed to have so many worries still left when we visited. He was afraid. He had so many things he was trying to work out, but he resolved them. He made his peace.

I'm happy for him. He's finally free of all the pain and suffering he had to endure from his cancer. He has no more worries. No more fear.

We don't get faced with death often, do we? Sure it's in the movies, in the news, all around us really. Only a few times, however, does it actually hit home. Only a few times are we faced with our own mortality. We ignore it, overlook it, accept it--but don't normally contemplate it, distract ourselves from it, create perpetual worlds on TV where people never age and the stories all end in "happily ever after" to almost deny it... but that doesn't stop it. Life doesn't tell us when it's going to end for us; only that it will indeed end.

You've all heard of Robin Hood, right? Great story--one of my favorites. I've heard it over and over all my life. Many different versions, but one thing usually stayed the same. Robin Hood never died. To this day I don't know if he was real or fictional, but in the story he is a character. Characters don't die. You tell the story again, and the characters come to life. I said the stories "usually stayed the same", because in only ONE book I have ever read about Robin Hood, they make it past �happily ever after�. That was the first time I realized why most stories don't. Apparently some people think the rest is just depressing.

Is it though? Why does it have to be? Why can't it be grand closing to the story, leaving behind a legacy of honor in other's memories? Just to live a satisfying life, to look back with no regrets. Finally bringing closure to everything life brought you... To rest in peace.

Chemo is a daily reminder of my own mortality, but will I have everything sorted out when my ship finally sets sail? Grandpa Jake did. Maybe this is the beginning of �happily ever after�, and not just �the end�.
~Erik

Sunday, February 4, 2007 2:34 AM CST
Here we go--another late night entry from Erik! I'm writting from my Palm T|X device connected to a Wi-Fi network and using a wireless keyboard that I just got. I really am 100hite and nerdy! ROTFLOL! Well... I wasn't in the chess club in high school... so maybe it's more like 97.5BR>
Last night in Colorado. I just finished indexing my great-grandma Marge's collection of Goebel Hummel figurines. She had a lot of them! My other job I had here was to take pictures of everything in the house. It's weird... I don't think much changed in my great-grandpa Jake's house since my first memories of it when I was 5 years old. I've moved around, and our house changed a lot, but this house seems almost timeless. It's really a shame that soon, all I'll have to remember it by are the pictures I just took of it. We celebrated Christmas here so many times. Family would come from all over the US. I remember the pool table in the basement just loaded with presents. We would shoot pool with grandpa and play cards with grandma. They had these little slot machines we liked to play. My favorite foods they cooked were corned beef, fish chowder, and grandpa's sourdough bread. I miss grandma smiling and laughing at everything. I miss grandpa yelling at us when we were too loud. Sitting here now, without family all around, and knowing there's only going to be one more time we all meet in this house... and not for a fun-filled holiday, it really feels like the end of an era. I never felt that time had moved so fast before now.

That's why I'm so glad I got the chance to visit grandpa. Despite the pain meds, there were moments of real clarity that let us have some good conversations. He actually remembered I had cancer and told me "You've been through a hell of a lot." He also told me that he was afraid of dying. So I got to tell him why I wasn't afraid of dying and shared my faith. Mom says he's doing pretty well now, but we all know his time on earth is almost up. He is a great man and an awesome grandfather. He will be missed dearly.

Sunday, January 28, 2007 5:37 PM CST
An Unexpected Window of Opportunity

Last Wednesday Erik told me he wants to minister to people with cancer.

And one has been on my mind continuously lately�

My grandfather is in hospice in Colorado Springs, in terrible pain since last October. He has renal cell carcinoma with brain, lung, and bone metastases. He is having a very hard time, and is afraid to go to sleep. My mother has been with him the past month.

Grandpa Jake is 84. He was born in Germany in 1922; his father was German and his mother was British. When he was about 2 they came to the US, and settled in a tiny town in Wisconsin (Darien, pop 200).

A short time later, Jake�s mother died giving birth to his little brother, who also died. When Jake was about 3 or 4, he went to live with a childless couple named Mose and Mame O�Connor who had a small farm. Jake was an only child, and his father was a barber and lived above the barber shop. He paid Mose and Mame for little Jacob�s keep. I learned only recently he was not required to do any chores! Nevertheless, from about age 7 until he graduated from high school, he lived the daily reality of the Great Depression. I love his stories. He told me about going to a schoolmate�s house in town for lunch, and they served soup. He was still hungry so he ran all the way to the farm so he could have another real lunch from Mame before running back to town for the afternoon of school. He was quite mischievous and got into trouble now and then.

He grew up and married his high school sweetheart Mary Louise soon after graduation. She became pregnant, and then died giving birth to my mother. Mary Louise was also an only child, and her father had just recently past away. So her mother (Jake�s mother-in-law Rae) took care of her new little granddaughter after her daughter died. The two of them were a family until the baby girl (Louisa) grew up, with regular visits from her Dad Jake.

Jake joined the military and went to fight in WW2 as a tail gunner. He was shot down over Germany and spent a year in a prisoner of war camp when Louisa was only 3. Interestingly he had a fake birth certificate that said he was born in Wisconsin (instead of Germany�which wouldn�t have gone over well with his captors). He survived three months of the Death March, and was liberated by the British.

He was severely malnourished, had dysentery, and lice. A cart ran over his foot when he tried to steal potatoes, and he had stepped on a nail before the march even started. He was in a hospital in Belgium for a while to recover and fatten up. Finally he was released and boarded a ship bound for home.

On the ship, he had acute appendicitis. There was no surgeon on board. After the appendix burst, the ship�s medic operated with a surgeon�s instructions over the radio. After he landed stateside they hospitalized him, but infection was rampant in his body. The doctor told him he was going to die. What do you think Jake said to that?

Needless to say, he survived that too.

Grandpa Jake then met and married Marge, a beautiful 17 year old from Michigan. They were stationed all over the US and Jake served on secret missions in the South Pacific, as flight engineer on planes taking photos and measuring radiation from nuclear bomb tests. He survived many other harrowing adventures.

Marge and Jake were married 56 years before she died of cancer four years ago.

Since then, he met Jean, a very sweet and lovely friend to Grandpa this past year. We all adore her! Photo from last May:

Please pray for Grandpa to be pain-free, and for him to meet his Savior with joy. Pray for the peace of God to surround him. God has blessed him and given him a long life and a family that loves him so much!

Erik�s wonderful NP Jody called last Thursday to let us know Erik did NOT have to come for his Thursday appointment. Since he is doing fine, he can also put off his pentamidine breathing treatment (prevents pneumonia).

This means an unexpected window of opportunity has suddenly come up. I changed my plane ticket (previously cancelled when Erik was hospitalized with fever) and bought Erik one too. We will leave tomorrow (Monday) to move him out of his apartment, and Erik and I will leave from Minneapolis Tuesday morning and come back on Sunday. Erik starts his second round of this chemo the next day.

Please pray that Erik is able to encourage and comfort Grandpa. Thank you for your prayers!

Blessings to you!
Donna

Wednesday, January 24, 2007 12:25 AM CST
Sleep? Who needs sleep!

Erik has been so excited and motivated about some ideas and projects he has been working until late in the night many nights. On Saturday night he was up almost all night and took a shower, went to church, out to lunch, home about an hour, then back out to go to Firestarters worship time an hour drive away. See www.firestartersmusic.com (in the gallery see �Ministry House� wow what a place!) The group of seven young men from our town had such an awesome time! They prayed for Erik, heard his story, and he talked with a new friend Ray who was miraculously spared in a car accident and is on fire for God. Erik didn�t get home until 3 am�? He was so pumped!

Monday, chemo day, I tried to wake him up for his morning meds. He had the startled-wide-awake-what-did-I-miss look in his red eyes�

Me: �Erik, want to take your medicine?�

He mumbled, �idunnowherethatsbeen�

Me: �What did you say?�

Him: (looking squarely at the medicine bottle): �I don�t know where that�s been.� As he said it, clarity came into his eyes and he started laughing �Okay that was supposed to make sense!�

What a hoot!

Sunday right before he left for Firestarters he heard from a friend in TX that another young man (32 year old Jason) had just found out he had a brain tumor and was going in for surgery Tuesday morning. Yesterday at 9 am Erik came to me and said �Jason is going under the knife right now� and so we stood in the kitchen praying and crying out for Jason. This type of surgery is obviously risky�speech is one thing that is often lost or takes weeks or months of rehab to regain.

Jason came out of surgery saying something to the effect, �Who let all these people in here!?�

Isn�t God good? Jason, God has a plan for you.

So today is another chemo day. Still somewhat time-consuming (3-4 hours per day), but no one is complaining. Sure beats driving to Fargo or Minneapolis!

Erik finishes this round of chemo on Friday, and we�ll take off for Minneapolis to move him out of his apartment and clean and take care of his affairs. Then we have to squeeze his stuff in our tiny house, and then go back to the cities for his appointment with the onc on Thursday.

I saw this today on another NB warrior site (three year old Ryan Malarkey) www.caringbridge.org/visit/ryanmalarkey

�Life may not be the party we hoped for, but while we're here we might as well dance.�

What a good idea! Just ask my kids about their crazy mama who dances with them in the kitchen�

Thanks for your continued prayers!

Blessings!
Donna

Wednesday, January 17, 2007 12:03 AM CST
QUICK UPDATE from Mom:

Erik is doing pretty well. Sunday�s speech at the Tree of Hope ceremony was great. We all thought he did a terrific job! We are grateful to the organizers for putting together this special event. Erik is working on getting it posted to the web.

He said something very interesting recently. There are really two types of people. Those who really listen and want to learn from others� experiences, and those who are so quick to give advice, they don�t get a chance to learn anything. Very profound. I am inspired to be a better listener, and I have learned MUCH from Erik these past couple months. He has a lot to say.

After the ceremony we enjoyed meeting some of the families that attended, and then had a very special treat going out to dinner with the Walz family! We came home while Erik drove back to the cities Sunday night through blowing snow with Nathan Walz (he is one year into treatment for non-Hodgkins lymphoma, 17 years old) and they had a great time. They had to get up early, though, and get to U of MN to pick up Erik�s meds, and had horrific morning traffic and icy roads to deal with. Erik dropped Nathan off in St Cloud and MIRACULOUSLY made it to Park Rapids only 35 minutes late for chemo. Unbelievable. So he was at the clinic 1:30 to 5 both Monday and Tuesday. I hope it goes a little quicker as we get in the new routine.

He takes oral chemo (temozolomide) before the IV chemo (irinotecan) every day for one week, then just IV irino the second week, with one week break. During his one week break, we have to get him moved out of his apt in the cities, and see Dr Neglia at the U of MN. Then he starts over with two more weeks of chemo. After that is done, he�ll be restaged again.

He feels okay so far, he says he feels �weird.� It has been quite a while since he has had chemo (over a year ago) so it is an unpleasant reminder of feeling yucky all the time. And we all miss Brandi terribly. She was so amazing in her ability to handle the logistics of the chemo routine and all the while keep Erik incredibly happy! Her energy, enthusiasm, and positive attitude knew no bounds. Please pray for great blessing in her life as she continues cosmetology school in the cities.

Erik is using his gifts of creativity to build Paul�s PC business, and he is starting a huge video editing project. Pray for his stamina, and that his dreams will be realized!

Please please pray for two little girls in great need of prayer fighting this awful disease: Penelope www.caringbridge.org/ny/penelope and Elesha
www.caringbridge.org/visit/elesha

We praise God for countless blessings! It would take twenty pages to list everything right now�my heart is so overflowing with thankfulness!!!! God is good. Really and truly, through all this, He is supplying abundant life, as He promised.

I praise God for you!!!!!
Donna

Thursday, January 11, 2007 11:52 AM CST
I'm here at the Masonic Cancer Center--just got the results of the scans and biopsy. Looks like the hu14.18-IL2 didn't really do anything, so we're going off that. Got a new plan already, and since I'm horrible at the technical side of all this ;-) I'll let my mom update that later. Basically it's more chemo for me. Should be not too bad... it's not really a killer dose, but we're going to stretch it out for a couple of months. Easy and long, as opposed to quick and brutal. Sounds pretty good to me!

We're staying upbeat even though the last treatment looks like kind of a waste. I probably waited too long. If we had started the antibodies sooner, it might not have had so much trouble penetrating the clumps of NB. You know, if one road dead-ends, you just start down another. Dr. Neglia seemed pretty confident about this new plan too, and I'll be able to get the treatment at the hospital in Park Rapids. Not so many loooong trips for mom to make down to the cities all the time! Sure she's happy about that :-)

Started moving a lot of my stuff home. I'm going to really miss the cities. When you're a kid like me, it's all so big and exciting... but I got stuff to look forward to at home. If all goes well, we could get a storefront for dad's PC Help business and I could live/work there. That I have to admit would be way more fun than renting! Erik Ludwinski, home owner and business partner! Sounds cool. More updates on how that all goes will follow. Now I can also put my photoshop skills to advertising work too.

But first... CHEMO!!!! Fun fun fun!
~Erik

*****************
Jan 12, early Friday morning�.
Mom�s medical notes:

Erik�s results were not good, but certainly could have been worse. The PET was officially read as �ambiguous� but viewing the Nov 9 to Jan 9 scans side-by-side there was clearly larger and brighter blobs in the pelvis and spine. The bone scan was read as �unchanged��I believe preliminary reports for both. Dr Neglia clearly hit a big pocket of neuroblastoma for the biopsy, because there was about 70 percent NB in the solid portion.

MIBG treatment? We do not know if Erik has MIBG-avid NB, since he has never had a positive MIBG scan, but they were all performed when he had very little tumor present. This means MIBG treatment is not an option, and may deliver too much radiation to the marrow anyway.

So Erik had the choice of going for heavy chemo (in NYC) or light (here).

The NYC treatment would involve very heavy chemo, and possibly hot antibodies (3F8 mouse antibody with radioactive iodine attached) with stem cell rescue (he has one bag of unpurged stem cells left) and then following up with 3F8 (if no HAMA formed from the hot antibodies). The risks of this are many: his disease is in the bone marrow, so his counts may never recover, even with stem cell rescue. He had total marrow irradiation just a year ago along with his stem cell transplant, which may be too much radiation and make hot antibodies too risky. He also has liver and kidney function to worry about. Lastly, he could possibly HAMA too soon (develop antibodies to the 3F8, rendering them ineffective).

His choice here would be two weeks of IV irinotecan, and one week of oral temozolomide every three weeks, trying this for two rounds, and rescanning the week of Feb 19. We�ll see Dr Neglia for a check up Feb 1 to see how Erik is tolerating the treatment. In a Sloan study just published Nov 2006 there was a response in 9 out of 19 refractory cases (2 CR) and 3 out of 17 progressive cases (1 PR)�the difference being one week of IV irinotecan at Sloan rather than two weeks, which is what Erik will do.

The positive is that it should not make him very sick (HOPEFULLY) and that he will be able to put all his energies into building up our PC business. Erik has brainstormed for days on end and has come up with some really great ideas! Being able to get the IV infusion in Park Rapids is a HUGE FACTOR. Driving to Fargo or Minneapolis for two weeks out of every three would be insane. The only reason he can get the infusion here is because since his first relapse, he turned 21! They would not treat a 20 year old here, only �adults.� See Erik, you ARE an adult. I knew it.

The rest of the news on the fam:

Homeschooling is going TERRIBLE. Guess we better hit the books today! I took Lesa and Aron along for Erik's testing and consultation week, and planned to do some �educational� stuff. Art museum, science museum, and copious study time during hospital waiting hours. Ha. We had to get up at 5 am for the first day (bone marrow biopsy at 7 am). They sat in the hospital 6 hours the first day and watched cartoons and played video games, 4 hours the next day-- same thing (I tried to review Greek with Lesa, but I�m too rusty to remember any prepositions and I forgot the flash cards), I quizzed Aron on math facts (he can multiply 7 x 25 in a flash�good for first grade, right?) and then four hours the third day, they drew pictures. Wait! They did see what a bone scan machine looks like, and I did give them a detailed explanation of radioactive isotopes and why different compounds have an affinity for biological uptake. I took Lesa shopping at Ikea and I bought her a $3 lamp for her room. They played for over 5 hours at a great indoor play area in Edina. We played two games of Scrabble. They went swimming. Then there was the failed attempt at 2 hours in JC Penney to find Lesa a new coat (fabulous sale, nothing she liked fit). And we all slept terrible because all three of were squished on Erik�s futon, while he slept on a mattress that leaks (but some nights it doesn�t). I�m tired.

Driving? Not a problem. Really I don�t mind. Since Nov 9 I drove to the cities nine times, which translates to 3600 miles. No biggie. Last night I arrived home at 9 pm, and there was blowing slow and some drifts on the road all the way from St Cloud, and the temperature dropped 40 degrees. I�m really tired.

Karl is back at college, last semester. In May he will graduate from high school (at 17) and complete a two year degree in Computer Network Security, and already an employer is very interested in hiring him (his Dad!) He is still teaching himself Japanese and a host of impressive piano pieces by his favorite Japanese composer. He is actually quite put out that we aren't Japanese.

Paul is fairly busy with his computer service business, which is REALLY GOOD. Let�s all think of ways to make him busier! He is the world�s best husband. He is always so positive, giving, serving, and works so hard. And since each trip to the cities means he gets a dozen bagels, he�s happy. What else do you do for a New Yorker stuck in the north woods?

The kids are so good too! I don�t think I could handle bickering right now, and they mercifully get along so well. We are reading �The Scarlet Pimpernel� aloud as a family, and should be able to finish it tonight or tomorrow.

We are all looking forward to Sunday at the Tree of Hope Ceremony. Erik will start chemo the next day, Monday.

Please continue to pray also for Brandi, and my grandfather who is in hospice in Colorado Springs. I would love to be able to see him and help my Mom. Thanks for checking on Erik and thanks so much for your prayers! You are at the top of our list of BLESSINGS. That list also includes great weather for November, December, and January (until last night, brrrr), good health for the rest of the family, and this very very precious time with Erik. What a guy! God is so good!

Donna

Thursday, January 4, 2007 7:21 PM CST
Wow. That was a lot of responses! It couldn't have come at a better time either. Around midnight on the 1st, I started to get a fever--and for all you guys out there who know about hickmen and ports, you know that means get to the emergency room fast! What made it really strange was a friend of mine had been getting MSN messages from me telling her to call my mother just before I got my fever. Only I didn't send them and no one else was in my apartment, so... weird. I ended up getting a taxi cab ride to Minneapolis and stayed three nights in the hospital. I spent the whole time reading all the posts and emails you guys sent me. Boy did they pick me up.

It also reminded me why I need to stay positive. When I encourage people, I have the ability to say, "I know how you feel." Those words may not seem like much, but when you feel horrible and hear them, it makes a big impact. It means someone else can completely empathize with your situation. They not only feel bad about it, but also understand it. To all you guys who have been in my shoes and wrote encouragement--thanks so much. I guess that's the blessing of our experiences. We have the power to hold each other up. Got a personal thank you as well, to Amber Dugan.

Hey Amber! I still remember our little chat at the first camp sunshine in WI. You were telling me about your experiences when you lost your hair and everything. Gotta tell you something--I look up to YOU and am amazed by YOUR strength. I'm a big guy, but you were just a little girl when you had your treatment. Your encouraging words have a lot more impact than you know. Thanks sweetie, and see you at the next camp sunshine!

All of us cancer vets gotta keep the hope flowing. A battle isn't so hard when you've got allies all around you.

Oh yea, and Shari--that midnight mac and cheese snack was awesome!
~Erik

*
Friday morning Jan 5...
Mini-medical update from MOM (lots and lots of running back and forth to Minneapolis�200 miles from Park Rapids�) and quick overview (especially for the NB crowd)�

Nov 9 relapse discovered in one-year post BMT tests: spine, pelvis, femurs, bone lesions on pelvis (ischium) and skull

Nov 20 started hu14.18-IL2 trial, course one had grade 3 toxicity in liver, only got 2 of 3 days of infusion

Dec 18 second course at 50 percent dose of hu14.18-IL2, grade 3 toxicity to liver after third infusion, next round dose would have to be cut in half again (down to 25 percent dose).

After the second course Erik was pretty sick and we are not doing a good job keeping the nausea under control, he is still throwing up two weeks later, ugh.

Dec 25 started complaining of pain in the same spot as the lesion shown on the bone scan

Dec 28 saw Dr Neglia and he thinks the pain indicates progression, but can�t do anything until restaging tests next week (Jan 9 and 10). Erik was still sick and dehydrated, so he got a liter of saline in clinic, along with the nasty pentamadine breathing treatment (prevent pneumonia).

Jan 1 had fever at 1 am, took a cab to the hospital, was admitted, put on antibiotics, and got out yesterday. I had a plane ticket to Colorado for Jan 3 to see my grandfather (in hospice), and my sister Dawn was going to go also, but she was sick and Erik thankfully got the fever BEFORE I left so I could go to the hospital.

Patients checking themselves into the hospital in the middle of the night is particularly frowned upon on the pediatric floor! Now Erik is convinced he shouldn�t be living alone in the cities�which is what both doctors (BMT and hem/onc) told him at relapse. We are hoping to find him an apartment in Park Rapids so we are only a few minutes away, and since I am driving to the cities constantly anyway for treatment, that doesn�t change anything. He might as well be here and watched and supported more closely.

SO the next big step is �restaging��he�ll have biopsy and PET-CT scan on Tuesday, bone scan on Wednesday, and see Dr Neglia to discuss options on Thursday. We really appreciate your prayers for a good plan.

ALSO PLEASE PLEASE PRAY FOR LITTLE ELESHA WHO IS VERY CRITICAL RIGHT NOW (NB WARRIOR RELAPSED DEC 27--TERRIFIC PAIN AND LUNG COLLAPSE FROM RAPID TUMOR GROWTH--NEEDS A MIRACLE--SEE LAST FEW UPDATES ON HER SITE)
www.caringbridge.org/visit/elesha

Blessings to you dear friends!!!!
Donna

***************

Monday, January 1, 2007 5:48 PM CST
Happy New Year�s.

Thanks to everyone who appreciated my last journal entry. I know there's a lot of kids out there who are going through the same stuff and feel the same way. Hopefully their voices will be heard.

Well it's the start of another year for me. Hopefully this one will be better. Didn't really make any real new years resolutions, but I know my main goal is to figure out what's going on in my life. It's starting to get almost creepy how every single good thing that ever happens to me somehow manages to disappoint me or let me down.

I wanted to build houses for the homeless in Mexico--ended up with cancer instead. I got into a wonderful marriage with an amazing girl--now that fell through as well. I was so hopeful that the last bonemarrow transplant would finally clear everything up--only to relapse for the third time. I had an unbelievably fun time at Best Buy--until I realized I don't have the stamina to work anymore with my new treatment, and transfers to an easier position are all locked down. And that treatment, which was supposed to be a breeze--chills, headaches, nausea, pain, loosing even more weight. Bloomington, where I've lived through most of this started to seem like home--but I might be forced to move back to Park Rapids, and kiss goodbye to any real independence. I'm even starting to lose my faith in people. Everything else has let me down, why shouldn't people do the same. I feel like I'm in a dark cave and every time I find a little ray of light, it snaps shut before I can get close. I just don't understand.

I have the honor of speaking at the Minnesota Tree of Hope ceremony, Jan 14th. Now I just need to find some hope to pass on before then. I want to encourage people so badly because I know there are others bearing the same burdens, but how can I keep others afloat when I'm drowning as well?

I want you all to have a great New Year's and count your blessings TWICE. That's what I'm going to do. There is hope and once I find it, I'll make sure the whole world knows about it.
~Erik

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