Author: Erika

It is with overwhelming sadness we want to let you know that our friend Mary Hook-Virnig passed away on Thursday. She fought Neuroblastoma and subsequent Leukemia with an amazing positive spirit and grace. While we cannot imagine the pain her very close family feels, we can very clearly see Mary running freely in Heaven. Please join us in praying for & supporting her family… www.caringbridge.org/marycatherinevirnig

We have more great news on Peter’s latest round of tests…. he remains “NED” (No Evidence of Disease in the Neuroblastoma world). We celebrate these milestones because we know so well how miraculous it is, and know it would be a mistake to ever take it for granted! Please, please pray for our friend Mary, who was diagnosed at the exact same time as Peter. They went through all of their frontline treatment, including transplant, at the same time. While her NB never fully cleared, she was later diagnosed with a very serious form of leukemia (NB treatment can cause secondary cancers) and went through a donor transplant this summer. She has just learned the leukemia is back, and despite persistent fevers that have had her in the hospital for a week, she has chosen to go home with her family. We are devastated for them, for all they have endured, to end up with these results, so we want nothing but a miracle for Mary! Please keep her in your prayers…
We hope you have a Happy Halloween… I don’t know how the weather is in MN today but it’s probably a bit warmer here in Ohio! Peter is a ‘rapster’ (??!!), Ellie is Dorothy from the Wizard of Oz, and Kate is a bunny rabbit. Even though we are on candy overload already, they are excited to go trick or treating tonight. Thanks for checking in… we will see Dr. Yanik in a couple of weeks for follow up and expect to be there every 6 months for scans. Take Care – Ty, Erika, Peter, Ellie & Kate

We haven’t posted in months and here we are posting twice in 1 week! If we haven’t said it before, we should point out how awesome it was to have Uncle Matt doing this daily when Peter was diagnosed and in the thick of the battle for soooo long… amazing gift! I don’t have a knack for writing so that, combined with the normalcy (??!!) in which we are living, are to blame for our serious lack of updates!
We met with Dr. Greg Yanik at the Univ of MI Mott’s Childrens Hospital yesterday and he is a great man. He took 2 hours to talk through Peter’s history (after examining Pete & bringing him down to the playroom), which we really appreciate because we’ve done some moving, and our worst fear is being somewhere where they don’t know his lengthy, complicated history, or get him on track for continued scans and follow-up. Peter did tell Dr. Yanik (in a nice way) that he’s not a Michigan fan, but when Dr. told him his daughter runs track at Notre Dame, and asked if he would he ever consider cheering for them, he shrugged his shoulders and said, “ummm, maybe!” I guess Pete knows how to win over a doctor. Overall, our conversation was very positive and he feels Pete is in a very good place. Of course you don’t ever get complacent with this disease, so here’s the plan:
Pete will have lots of tests next week, including MIBG, CT scans, Hearing Eval, Pulmonary Function Test, Echocardiogram over a 3-day period. We will see Dr. Yanik in 4 weeks, and every 2 months following that. Peter will have scans every 6 months for 2 more years, adding the brain MRI at next visit, since he is still suffering from migraines. Once he reaches 5 years NED (no evidence of disease) – 2 years from now – he will transition to the Long Term Effects team, which will involve Neurology, Endocrinology, Pulmonary, etc. Needless to say, the 1 hour 15 min drive to Ann Arbor is a heck of a lot less stressful for Peter. We’ll see how he handles scans next week, but hopefully he won’t have the same issues he has had surrounding our trips out east over the last few years.
Peter is doing fantastic and it a joy to watch him with friends, playing flag football, hockey, and doing well in school. Please continue to keep our friend Mary in your prayers as she continues to gain strength after having a 2nd transplant for secondary leukemia. She is truly amazing…
We will update when we have results, but hope everything will remain status quo around here!

SO FAR SO GOOD on the scans! Dr. Kushner sent an email last night to say the CT scans and the MIBG both look great! We are so thankful. We LOVE getting emailed results as opposed to a tap on the shoulder in clinic or a phone call! Ty said that right when he told Pete that the scans looked great so far, Peter asked “then why do I need the liver MRI tomorrow?” Good question Pete… We know he still needs it (MRI could pick up different things than the CTs) but who can blame the kid for not wanting to lay in that machine for an hour & a half! We will keep you posted; won’t have bone marrow results until next week i’m sure. Take Care!

In some ways it seems like forever ago that we were back in cancer’s grip (July) when we spent a couple weeks in NY learning of suspicious spots in the liver, more testing, confirmed abnormal, back home, back to NY…. biopsy, waiting, waiting, followed by an enormous sense of relief. And in other ways it feels like yesterday. We sort of teeter on this line between staying ‘in’ the world of children’s cancer, where we are still traveling every 3 months + for Peter’s tests, the intermittent ‘scare’, still seeking knowledge about new treatments, the search for a cure, keeping tabs on the children who are beating it and those are fighting it, some over & over, those who are not so fortunate but get the ultimate cure, not ever wanting to lose the perspective we have gained on life and how quickly things can change; and ‘moving on’ to where it doesn’t consume our lives. There is no easy way to balance it so we just do. Not really sure where I’m going with that, but I think about it every time one of us leaves the rest of the family behind for 3-5 days and the feelings of stress it conjures up no matter how long it’s been, how long Peter has been “NED”.
This morning was one such day… Ty and Peter flew out and are now safely at the Ronald McDonald House of NYC. Pete called earlier and told me there was a carnival in the playroom downstairs… and he made sure to let Dad know that it is open until 9pm! There is nothing better than seeing him excited / distracted upon arrival, because there is definitely stress involved for Pete when a trip to NY is on the horizon. He doesn’t complain about going, ever, nor does he associate what the stress is, but there are headaches, tummy aches, etc that preceed every trip.
They will start Tuesday by going to the clinic for the IV placement, blood draws, visit with the NPs/Doctor. Then he will have CT scans (head/neck/chest/abdomen/pelvis), MIBG injection, and an Audiogram. On Wednesday he has MIBG scan and Bone Marrow Biopsies, followed by a Liver MRI on Thursday. Barring any flight delays they should be back home late Thursday night.
Of course we welcome your thoughts and prayers for a successful, uneventful visit. We are especially thinking of our friends Erik & Mary, who couldn’t be more deserving of being honored at the Children’s Cancer Research Fund gala on Saturday evening. They are both incredible, determined young adults who are trying to kick this stubborn, sneaky disease for the fourth & first time, respectively. And an adorable little guy we met in NY in July from WI, same age as Pete, who has learned of possible relapse and is having surgery this week.
All on caringbridge – erikludwinski / marycatherinevirnig / jackbartosz
Will post as we have news this week!

Wow! Has it been 4 weeks already? Peter & I will take to the skies again early Tuesday morning. After the scare with the liver lesions, they want to see him again and repeat most of his scans this week.
We will start with a clinic visit on Tuesday, then Wednesday and Thursday will be full days with an ultrasound, MIBG scan, CT scans, and another liver MRI. If all goes according to plan, we will fly home on Friday.
It is amazing how much of a rollercoaster the last month has been. We are feeling good about where Peter is at. We will find out what exactly the lesions are and if any treatment is required, and of course, more than anything we want to hear that Peter is still NED (No Evidence of Disease)! It sort of feels like we’ve stepped off the rollercoaster again. We would like to stay off the rollercoaster please!! This has been a very real & sickening reminder of just how elusive and nasty this disease is.
And we ask that you would join us in cheering on a couple of our dear friends. Erik (caringbridge/mn/erikludwinski) was diagnosed at the age of 6, then relapsed at 20 and again at 21 & has been in treatment but stable for 3 years, while excelling at Bemidji State, volunteering, attending camps & being generally about as busy as a guy can be! His disease has progressed and they will now be in NY this week seeking treatment options. And Mary (caringbridge/marycatherinevirnig), another young adult, who was diagnosed the same time as Peter, is a phenomenal person, also from an amazing family, has been at war with this disease for 3 straight years, while going to college full time at UW-River Falls. She has scans this week at the U of M. It is one thing to fight this disease as a young child, when you don’t fully grasp what is happening, how much you are missing out on, etc. But to be in the thick of it as a young adult and handle it with the grace these two do, is very inspiring.

We got a call from Dr. Kushner’s office last night. Dr. K was in a meeting so we haven’t had a chance to ask him the bazillion questions racing through our minds just yet, but we will soon. The MRI confirmed there are “abnormalities” so they’ve asked us to come back Monday and will biopsy the spots on Wednesday. Dr. LaQuaglia will do this; he is the surgeon who performed Peter’s 3rd abdominal surgery 2 August’s ago. We’re looking at one-way flights at this point; we have no idea what to expect in terms of the invasiveness of the surgery or the recovery, or anything else.
I feel like I’m in shock, but I know Ty is past the shock and feels like he’s being tortured. It breaks my heart equally to see Ty this way and to think about Peter having to endure more “stuff”… we both just want to take his place. He doesn’t even know yet that we have to turn around & leave again and now he’s old enough that a thorough explanation will be required. It reminds me how cute it was in NY last week that every test we went to (most of which he has done a million times)- he would immediately ask the techs, “about how long is this one going to take…. 15 minutes or so?” No such luck… they’re all longer than that!
I wholeheartedly expected a call that the MRI showed nothing. Apparently it’s not too uncommon to see spots on a ct scan that are “nothing”. The ct just shows spots; the MRI helps narrow down what they actually are. That’s why they added the liver MRI. I don’t know if an MRI can also show spots (now “abnormalities”) that end up being nothing too, but I certainly hope so.
For those of you who see Peter regularly, you know how healthy he looks again. We think he has finally regained his strength from the ARDS 2 summers ago – a very long recovery, but his lungs were in pretty rough shape. Not to mention the transplant, radiation, surgeries, chemo he had already been through.
I just don’t even know where to begin or end here, but please pray that this is a false alarm and not our worst enemy coming back for more. Please also pray for our girls, who are always in wonderful hands, but end up being left behind. We know how scary & confusing this all must seem to a 5- and 3- year old.

Hello All,

Peter and I will be heading to NYC tomorrow for his 3 month check up, which will consist of CT scans, MIBG scans, blood work and a bone marrow biopsy. This is the first time that Peter and I have gone out to NYC without Erika or the girls. I have to admit I am more than a little nervous. I am only nervous because you never know what the results of the tests are going to be. Erika and I are feel great about where Peter is at and when people ask us “how he is doing?” We respond by saying “great.” He is doing great in school, gaining weight, has a ton of energy and has a very good appetite. So we are very, very thankful for how he has responded to his treatment.

The kids have adjusted very well to the move back to the cities and they are very active in a ton of different activities like hockey, gymnastics, swimming, school, watching hockey and playing with grandma’s, grandpa’s and cousins. Peter and Ellie are going to play in an exhibition game tomorrow at the US Pond Hockey Championships. They are both very excited about this, even though it is supposed to be very cold. We will be sure to let you know how things turn out.

As for Erika and I, we are plugging along. Erika is thankfully very busy with work at Tradition Mortgage. With interest rates being what they are she has been working very hard and doing a lot of business. The team I coach is doing very well, we are currently 13 and 3, with all 3 losses coming by one goal. We have a great group of kids and coaches and it is fun to be at the rink everyday.

Finally, we also want to let you know how much we appreciate you all continuing to pray for Peter and for keeping our family in your thoughts. This has been very difficult journey and we would not be where we are today without the help of all our friends and family.

God Bless,

Ty, Erika, Peter, Ellie and Kate

While most of us are bustling about, planning our holidays and making/checking off our lists, 2 families we care so much about face the coming weeks bearing unimaginable pain & sadness. Please keep the Hauschildt’s in your prayers; little Ella is now an angel after battling DIPG (a rare brain tumor) for just about a year. She has left quite a mark on this world and we ask that you keep her Mom, Dad and little brother Caden in your prayers. They have been and continue to be a real inspiration through their faith and hope. And our friend Donna, who we’ve mentioned here before, also passed away over the weekend. She, too, fought valiantly against an aggressive cancer, with grace and a real sense of humor. We met Donna & Biz not too long after moving to Brainerd, when Ty joined the softball staff for a couple years, and after Donna’s diagnosis, we would see them at the U, as she and Peter were going through treatment simultaneously.
So we near Thanksgiving with much sadness for our friends, while continuing to feel so fortunate. Peter continues to do well. He seems very “normal” now, participating in hockey, swimming lessons and loving school. Each trip to NY & round of testing seems a little harder to handle, as we are sort of out of the “cancer routine” now. His HAMA level is coming down slowly so he will continue the antibody treatment when the numbers are low enough. We will go to NY sometime in January for testing.
In case you are in the area, the Rosemount Hockey program is having their annual “Skate with the Irish” event in honor of Peter for the 3rd straight year… wow. The proceeds of this event will go directly to the foundation we started last year, called CHECK (Coaches Helping Eliminate Cancer in Kids). We hope to spread some financial help and happiness to kids and their families who are battling cancer, and also to further the research of pediatric cancers, in search of a cure. The event will be held on Wednesday the 26th from 7-8:30pm at the Rosemount Civic Center. We’re excited to be able to attend this year, as we have been too far away and preoccupied with treatment the past couple of years!
Have a Happy Thanksgiving and thank you for checking in!

Peter and I returned from NY last night. It seemed like a pretty quick trip this time. We left the snow in MN and arrived late Sunday night, but not too late for Peter to want a little “before-bed snack” – if that’s what you call a caesar salad, bread and manicotti! That is one of the things we love about NYC – nothing closes, or at least not until really late! And while we try not to get too carried away, what Peter wants in New York, Peter gets in New York. When you see first-hand what these kids endure on a regular basis, it’s hard not to spoil them a little.
I should also mention, since many of you have asked, that Grandpa Brian’s surgery went well and they got all of the cancer, so no further treatment should be needed. In fact, Grandma & Grandpa took the girls north with them after Great-Grandma’s funeral, which I thought was rather brave, since Grandpa was still moving pretty slow! Anyway, they came back last night and were excited to show us the pumpkins they carved, all their paintings, etc. I’m really not sure what we would do without our entire family…thank you to all of you!!!
Peter had the routine testing this round, with1 addition. He had the physical exam, with blood work, urine analysis, etc. CT scan – head, neck, chest, abdomen, pelvis, MRI of the brain (addition), MIBG scan and bone marrow biopsies. The results of the ct’s, mri and mibg and are all clear…words we will NEVER get tired of hearing! We will find out bone marrow results and a few other things next week. They also tested him for HAMA while we were there & he’s still positive, so we’ll draw blood every 2 weeks to see when he becomes HAMA-negative, and then head back for 3F8 treatment.
Since the cold, rainy weather followed us east from MN, we didn’t get out too much this time, but we had fun in the Ronald McDonald House playroom and we attended a great Halloween party there on Tues night, complete with dinner, cupcakes & ice cream, games and trick-or-treating for the kids (NY style – indoors!) We’ve probably mentioned before that the playroom on the pediatric floor at Memorial Sloan Kettering is second to none, and someone had donated costumes for all the kids, so Peter chose a Superman one and now he has 2 for this year – Superman and Blue Ninja Warrior. He’s so excited for his school party tomorrow and then trick-or-treating with sisters, cousins and Grandpa Sig! (I’m excited that it’s going to be 65 degrees again tomorrow!) Ellie is going to be a kitty and Kate a bumble bee  HAPPY HALLOWEEN!!!
Hockey started last weekend so that’s the other major excitement here! Peter and Ellie will be on the same team along with our friend Jake, and the kids can’t wait for their first “real practice” on Saturday! They’re also fired up about Uncle Tito’s new rink and being able to log some extra hours there.
Last but not least, a great big “YES!” for the Warrior Princess (Mary) on her first clean bone marrow scans… this young lady is absolutely amazing, juggling a very demanding college schedule while on chemo. Mary and her family so deserve this wonderful news!
And please, please keep little Ella high on your prayer list…she needs a miracle! We are so sad about the road that she, John, Erika and Caden have to face.

Once again, it’s been awhile since our last post! Life definitely hasn’t slowed down, but as the saying goes, “no news is good news”! There have been lots of “big events” recently; i’ll try to recap here…
– First, congrats to Uncle Matt and Auntie G on the very early arrival of Briley Lawrence, our beautiful new 3-pound, 9-week early little neice/cousin! She’s doing great. We’re pretty sure we induced labor by living with them for so long (or at the very least, we prepared them for a more hectic schedule with kids?!) We’re very happy she’s doing so well and hopefully she’ll get to go home soon!
– Kate has decided that she doesn’t really want a birthday in November, because the “nuk fairy” is supposed to show up on her birthday to take her nukkies away. We NEVER thought Ellie would go for that when she turned 3, but she did great! Kate, however, was 9 months old when cancer took over our lives! While she has always been very well cared-for, she was just a baby, and she definitely gets the baby treatment in our family! The idea of the nuk fairy hasn’t gone over so well, until now. We may have struck a deal now that we told her, “maybe baby Briley will need a Nukie!” I think the birthday is back on…
– I will never forget just over a year ago, when Peter came off the ventilator in NY. Uncle Matt was with us in NY and it was such a production. There were still so many tubes, cords, lines; you could tell the doctors and nurses really prepared themselves for these things, we all had to leave the room as sometimes patients cannot make the switch to room air and need to be re-intubated. Peter did well, and we got a call moments later that my Grandpa Art had passed away in Mpls during an Angiogram. I think those 2 things happened simultaneously and Grandpa was giving Peter his last breath to help Pete breathe on his own again. This morning, just over 1 year later, Grandma Marie went to be with him. Auntie Meeses and I were able to spend yesterday with her and we are thankful for that.
– Peter is doing great. He did have the Rituxan / Cytoxan treatment a couple of weeks ago. He had 1 full day of Rituxan, then a repeat of that 2 weeks later, then Cytoxan the following day. He did great with the pokes, and then one of the nurses asked him if he wanted to play the “Wii” (sp?!), so he had a lot of fun with that while getting the infusions. Had a lot of nausea the day following the Cytoxan (chemo), but has felt great since. He didn’t lose his hair even though he told Uncle Troy that he lost some of it but it came back in overnight. That’s good because he was getting nervous about losing it. He asked me if he could just tell his class that he got a haircut if it started falling out!
– Last Thursday Ty took Peter to the U before school to check his counts, and also to draw blood for a HAMA test in NY. Unfortunately, we found out this week that he is still HAMA-positive. But it can take a couple of months for the HAMA to come down (after the above regimen to try and bring it down)
– Given that, Peter won’t be getting 3F8 treatment immediately, but he is due for scans/tests again so we’ll head east on Sunday the 26th. He doesn’t care that he has to get poked & prodded, sedated, etc as long as we’re back in time for Trick-or-Treating, which we will be!!!
– Other than that, we are settling in to life in Apple Valley!
– My Dad’s surgery is Monday, so we appreciate your thoughts/prayers for good news there!
– Thinking of all our friends fighting this dreadful disease…

We had a fun weekend. Friday night we had dinner with Uncle Matt/Auntie G (almost a nightly ritual!), watched the Twins game. Saturday we had some flag football activities, then went to cousins Macy & Brooks’ birthday party; and on Sunday Peter was able to go to the Twins game with Grandma & Grandpa Hanson and Uncle Matt. He didn’t catch any foul balls but it sounds like they had fun!
On Monday morning we made into the parking ramp at the U before getting a call that Peter’s treatment had to be postponed. It wasn’t a preventable situation; just a timing issue with the insurance and they believed it would be squared away by Thursday. We had his arms all numbed up, ready for the poke(s)! No matter – he was ecstatic to put this off for a few more days, and wanted to know if he could go to school! We were still able to meet with Dr. Weigel & Jody (our wonderful NP) and discuss the treatment & possible side effects. The Rituximab is a drug they administer a lot of; typically for lymphoma’s. This is a good thing – they are very familiar with it. The most common issue is immediate reactions to the drug, which can be severe, so they administer it very slowly and have an arsenal of drugs available in case they need them. He will get this infusion on Thursday and again in 2 weeks. It targets B cells so it will put him at a higher risk of infection (particularly viral) for awhile, but won’t lower his counts in a sense of making him neutropenic (like he would get each round of chemo, which targets T cells). The day after the 2nd Rituxan infusion he’ll get Cytoxan, and this is a chemo he has had. This dosage is just over half what he had before, and they anticipate some nausea and that he may be a bit wiped out for a couple of days, but that should be it. They do expect his hair to thin at the very least; maybe fall out since he’s had so much treatment. I told Peter and he said, “well I’ve been bald before!” I guess that didn’t bother him too much! I worried this might not go over so well now that he’s 6, in school, and is much more aware than he was at the age of 4. He said he told his class that he has cancer. I think it’s good because the more kids can understand his situation, the more normal he will feel, and that’s what he loves… to be normal and do normal kid things!
First flag football game tonight – he told me on the way home that his team lost 1-0. I’m not sure what kind of scoring system they use in Flag Football, but I agreed. Then he told me that he is slower than all the other kids, “but”, he said, “I probably practice my moves a lot more, so I am still really good!” … I love it. Always finding the silver lining.
Thanks for your ongoing prayers for Pete, and please pray for our friend Ella! (http://www.caringbridge.org/visit/ellahope)