Author: Uncle Matt

The days since I last posted have been good. There is some sense of normalcy in the Eigner household and Peter is doing pretty well, given that the recovery from ARDS is long and difficult. Eating is still a struggle and sometimes he’s just not his normal, outgoing self. He’ll play baseball, but he’s not going to run the bases. In the past, he would be running on a foul ball. And he wasn’t stopping at first base, either. He was going to run all four if you didn’t tag him out. Yet there are moments of the energetic goof ball within.

Next Tuesday Erika and Peter are scheduled for a flight to NYC, where they will have CT scans, MIBG, and a bone marrow biopsy. These tests last through Thursday and then the schedule was to come back on Friday. However, Sloan-Kettering called today and Peter is now HAMA negative. This good bit of news means that he can resume the antibody treatments that weren’t completed before. So they are changing flights to stay in NYC for another week and resume the antibody treatments. It’s small price to pay to get Peter the best weapons against cancer.

I have some more info on the CT scans. The abdominal mass that was just operated on does not show up any more. That alone makes the challenge and heartache of the last surgery all worthwhile. Its goal was accomplished.

As I understand it, the lymph nodes in the superclavicular area do look completely normal. They simply remark because it was previously a location of disease.

The kidney ultrasound came back and the kidney is functioning just fine. They believe that any abnormality they saw is due to trauma recovery. Memorial Sloan-Kettering in NY hasn’t weighed in on any of these tests yet, but the Eigners should hear from them before long.

Peter is going along just fine. Erika said he walks slowly and lags behind the group. He’s eating better, but remains weak. I imagine he’s gaining a tad more strength each day. And in good time he’ll be running out front of the pack once again. And if he’s running out front of the pack, how long before he’s skating again?

The CT scans that were performed last week will result in more testing today. Peter is back at the U for an ultrasound of his kidney. They noticed a change in one of them and are concerned about blood flow. It could be that the kidney is recovering from trauma, but they’re taking a closer look.

They still “remark” on a lymph node or two in the left superclavicular area behind his left collar bone. Apparently it’s unchanged, but they still remark on it because of the original involvement of these nodes. This is a little unnerving, because Peter has rested with his left arm over his head a lot and has indicated that it avoids pain. However, the last surgery was also on his left side, so that could be reason enough.

I think those scans are also sent to NY for review. I’ll update soon with the results of the ultrasound. I should know more this afternoon.

Oh, I almost forgot. Peter is doing really well. He’s making strides each day on the journey back to full health.

Peter and Erika came to the cities last night (Wednesday) before their tests at the U today. We had a little gathering for Peter’s cousin Brooks, who just turned one. The minute I arrived, Peter greeted me and summoned me out to the yard to play catch. Erika was right, it is night and day compared to the last time I saw him, only a week earlier. He is still skinny as a rail with arms like small curtain rods, but his energy and demeanor have returned. And his throwing and catching are better than they were just a short time ago. I know he didn’t learn his new skills laying in bed for a month. So it’s evidence that he didn’t stop developing, as any 5-year-old does, during his tumultuous late summer.

The tests went basically as scheduled today. Peter and Mom ran into many familiar faces from the many days and nights at the U of M throughout the year — faces that have helped Peter and family through many hard times. The hearing test is the only one that produces immediate results. One of Peter’s ears is slightly worse than the other with what they call profound hearing loss in the high frequencies. That doesn’t sound good, but I’ve never seen much evidence of it during my time with Peter. In fact, the Lion King was too loud. Daddy covered Peter’s ears for much of the production. But has trouble hearing certain frequencies, especially when there is background noise. I can’t imagine that holding this guy back.

I’ll post the other test results as they are released. I’ve posted a photo album and slideshow that chronicles the crazy month of August. You can view it here.

A handful of us were able to meet the Eigners at the airport last week with a “Welcome Home Peter” sign, decorated by his cousins. He rolled up in his stroller and looked great, although he wasn’t willing to stand up and he remained somewhat timid. But he was talking and greeting us and generally comfortable. When he went home, he hopped on his bike and took a ride in the driveway.

The past week or so at home has gone pretty well. He voluntarily gets a couple doses of activity each day and watches a lot of cartoons in between. He involuntarily but dutifully takes his accutane pills each day and they’re going down just fine. He voluntarily sends himself to bed each night (I guess that must be nice, right parents?!). And eating is sometimes voluntary and sometimes not. Overall, Erika said it’s night and day comparing him now to when he left NYC. He has a little spunk and he’s getting better and better.

They’ll be back in Minneapolis for the tests on Thursday. There will be an audiogram that should determine the permanent state of Peter’s hearing. There will be the CT scans to look for cancer in his lymphatic system. And there will be labs drawn to determine, among other things, his current HAMA levels. As you know, he reached HAMA long ago and that put an end to the antibody treatments for the time being. However, before they left NY, his HAMA level had dropped surprisingly low. This is actually really good news, because it means that he may be able to resume the 3F8 antibodies sooner than later.

Stay tuned for pictures from pre-surgery, post-surgery, the ARDS episode, and his fantastic recovery. Some of them aren’t very pretty, but the progress is one of the more beautiful things I’ve seen.

Tomorrow is a very exciting day, as Ty, Erika, and Peter will board a plane at 1:30 Eastern and head back to Minnesota. What a month+ it’s been. On August 1st, they flew to NYC. On the 3rd, Peter had extensive (and successful) surgery to scrape away some cancerous cells in his abdomen. For days he was in recovery. Then on the 8th, what looked like “big pneumonia” was discovered. Hours later Peter’s lungs seized, he slipped into critical condition, and was put on the vent. It was determined he had ARDS days later (cause will never be known for certain). He remained on life support until the 22nd when he began breathing on his own again. During that time on the vent, the one year anniversary of Peter’s diagnosis passed while he was fighting against something OTHER than cancer. On the 30th, they were able to leave the hospital and now, on September 5th, they will be coming home and Ty can begin writing his book, “How to Live in New York for 35 Days (when you’ve packed 4 days of clothes)”.

I know that’s repeat information for you, but when I thought about all that’s happened since they left, I started shaking my head in disbelief. Bunching all those events into a single paragraph illustrates the severity of life, the disruption to a family (and their total love), a miracle in process, and more. We’ve all seen great comebacks in sports, but that’s just a game after all. We’re witnessing a comeback of an entirely different proportion.

That’s enough editorial. Here are the facts of the meeting today. The surgeon, Dr. LaQuaglia, is the doctor that said they could go home. They asked him why the MIBG scans were negative for so long, yet there was still disease in his abdomen. He said that it just wasn’t a huge clump of cells. The cancer was actually in three lymph nodes in the abdomen and the chemo may not have reached them, because the blood vessels that carry the chemo may have been killed by the chemo in the early rounds.

Dr. Kushner is very excited for Peter and family. He said that “Peter is made up of something very special.” He laid out a course of action in the near-term, including CT scans at the U of M next week. These scans are necessary because the disease was in lymph nodes, so spreading is a concern. On Monday, Peter will start taking pills of Accutane, a drug typically for acne that has some benefits for fighting cancer. He will take these “horse pills” each day for six months, two weeks on, two weeks off. There can be side effects of dryness, peeling skin, and irritability. They will head back to NY in a month for a full gamut of tests and they will determine the plan for radiation, continued antibody treatments, etc.

In the meantime, they need to be hyper-vigilant in observing any symptoms of a cold, flu, or… anything. The simplest little bug could be disastrous. So school is on hold while Peter gets stronger and continues the ultimate comeback.

Today, Labor Day, consisted of a trip to the Bronx Zoo and a barbeque at the Ronald McDonald house. Peter is doing pretty well, but progress remains slow. Ty and Erika try to line up activities that he’ll enjoy and wants to do, but Peter’s participation in the activities is minimal. His physical activity today was to walk down 3/4 of a flight of stairs, since he had to exit the stroller anyway and Mom and Dad encouraged him. His legs were burning before he could get all the way down and he refused to go any farther. At the evening barbeque, other kids were playing right in front of him, but leaving the stroller still didn’t interest him. That is unnatural for most any kid and especially for Peter.

The eating is definitely difficult, but Ty is strict about getting Peter 1400 calories per day. It’s just not optional. Peter is also off the fluid bag, so it’s very important that he’s drinking as well, and he’s doing OK with that. The nausea has been under control and he didn’t get the anti-nausea medication this morning, so the methadone may be taking care of all the withdrawal symptoms. Maybe he’s just about done with the methadone as well.

Tomorrow is a fairly big day at the clinic. They will meet with Dr. LaQuaglia and Dr. Kushner to assess Peter’s status and future. They will hopefully learn when they can book a flight home (this week?) and when they need to book a flight back to NY for additional cancer treatments. I’ll summarize the results of the meetings tomorrow when I know more.

I almost forgot. Erika bought tickets to The Lion King on Broadway. Peter will love that. Hopefully they’ll all love it.

On Thursday night, the Eigners were released from the hospital and checked into the Ronald McDonald House. Later on Friday morning, they were back at the clinic, because Peter threw up in the morning and threw up again in the clinic waiting room. He wasn’t feeling very well. During a long day at the clinic meeting with a doctor and psychologist (because Peter’s often reclusive), they determined that he’s still going through withdrawals from the loads of various narcotics. He missed a couple doses of methadone — the pain/withdrawal narcotic — so they’re making sure he’s getting that now and things are better. It’s a very small dose, but it doesn’t take much for a 40-pound body. He’s also on an anti-nausea medication.

They did get out of the clinic in the evening with an understanding that it’s simply going to take a while. HIs body and mind are still very fatigued. The goal is to keep him out of the hospital, let each day’s activities build some strength, and only push his eating habits. Eating is still a big challenge. He’s wearing a backpack with fluids that go through his hickman to make sure he’s hydrated. Last night they made him a malt and he struggled through it. Then they went to a little shop where you can paint ceramics and he painted a dinosaur.

He had a good night and it’s a beautiful Saturday, so they might take a buggy ride around Central Park. His spirits are pretty good when the withdrawals are under control. Ty and Erika haven’t made any flight arrangements to come home. It’s a little to early to know when they might be able to leave, but late next week is the current guess. But they’re out of the hospital and that’s step one. Let’s hope that more food and less narcotics enter Peter’s body in the coming days.

The challenges continue, but there haven’t been any setbacks. Fevers have come and gone and even though they haven’t bothered Peter much, they won’t be getting out of the hospital until those are under control. They may be caused by a collapsed area of his left lung. Physical therapy continues to be hard on him. The chicken nuggets didn’t work and eating remains a struggle.

OK, so now that I have that information out of the way, I can move on to some brighter news. Yesterday he went to the playroom twice on his own and took a walk. He even showered (a HUGE step in Erika’s words). He ate an ice cream sundae last night that he made himself in his room. Also, Peter had made/colored a butterfly back in the spring while at the U. Yesterday evening, they received a call from the Children’s Cancer Research Fund that he is a winner of their butterfly drawing contest. Peter and two guests will be invited to a celebration in November where the winners will be honored. Humble Peter is being too shy to tell anyone, but that sounds pretty neat to me.

When the Eigners do get released from the hospital, they have made arrangements at the Ronald McDonald house until they can actually leave NYC. Thanks again to Matt and Allison Slater for opening their home to them for basically all of August. Either Ty or Erika has slept in their guest room every night (and other visitors, as well), so thanks for disrupting your routines and letting our family in. It’s very much appreciated.

Peter is still doing remarkably well, although it’s not an easy time for him. He’s been battling some headaches, he’s had some high spikes in blood pressure, and he’s had a fever each of the past two nights. None of these symptoms have anyone on high alert. I suppose they are just signs that he’s early in his recovery.

He’s been walking some on his own and getting physical therapy, as well. This includes more walking, punching, kicking, squatting, etc. It’s a good thing and necessary, but it’s taking a toll on him. He’s become abnormally reclusive with the staff, seemingly because of the difficulty of therapy. I personally didn’t like being pushed beyond my comfort zone by coaches in high school, but I understood the purpose. Maybe it’s tough to grasp the reasoning at five years old.

Another challenge is eating enough food. He started eating over the weekend and ate pretty well, but it’s been slow going since. His stomach hasn’t been getting much use the past three weeks and eating just isn’t appealing. When I spoke with Erika today, she was headed out for some Chicken McNuggets for him. Maybe those will work. He’s still getting liquid nutrients, but needs to transition to real food.

Despite the challenges, Peter may be released from the hospital in the coming days. And maybe he’ll be on a flight back to his own house before long, where he’ll see his sisters, his dog, his cat, and his own bedroom. Erika asked the doctor today if there was any chance that Peter would be able to attend kindergarten this year; He’s been very excited for his first year of school, but they’ve stopped talking about it with all the uncertainty. The doctor said that he should most definitely attend when possible and the normalcy would be a great thing. So they told Peter that school is coming up and that helped his spirits.

As of yesterday, Peter was still in the Pediatric Observation Unit at the hospital, but he should be into a “real” room at any time. I forgot to mention that on Saturday, Peter ate some yogurt and meatballs and drank some juice. Since then he’s been eating well on his own.

Since he’s breathing on his own, the tube to his lungs was obviously removed. And his blood gas levels have remained so stable that he’s off the BiPAP and nose oxygen. Since he’s eating on his own, the tube through his nose to his stomach was removed as well. He also has both lines out of his feet and other various attachments have been removed. So he’s just down to his good old hickman in his chest and he’s been living with that for a year.

Peter’s strides are getting longer now (literally and figuratively). He’s talking more and sleeping less. He’s probably sleeping closer to 1/2 the day now instead of 3/4 of it. Yesterday he took a walk right out of the room and down the hall to a play room. That pretty much wiped him out, but that’s how strength is regained. His lungs were seriously damaged 18 days ago, so to be walking around without oxygen assistance is amazing.

I haven’t posted much on what’s ahead lately, because everything has just been hour by hour and day by day. It’s still that way, but I think the doctors will soon be looking further ahead. He’s getting physical therapy and his lungs are clearly healing. We don’t know how long it takes for a full recovery or whether they’ll start radiation or some other cancer treatment prior to that. We just know he’s doing a wonderful job and your continued support is helping.

On Friday around noon Peter was moved out of the ICU and back to Memorial Sloan Kettering across the street. The staff at the hospital had been calling to the ICU repeatedly for the past two weeks for updates on his progress. So when Peter rolled back into their care looking no worse for the wear, they were stunned and ecstatic. He left two weeks earlier as their sickest patient.

I’m back in Minneapolis now, but from the sounds of it, Peter’s gathering a real head of steam. The nausea and vomiting continued into Friday evening, but it has passed. He’s starting to speak more and this morning he walked to the bathroom. With nurses’ assistance, he got out of bed, took a modest 6 or 8 strides to the bathroom and then over to a chair, where he is sitting now. In the chair he’s playing baseball with his parents and Auntie G. He’s the Twins and he’s battling the Yankees. He was pitching to Jeter and over the phone he told me that the score was 9 to 6 and the Twins are winning.

If that isn’t a sign of the same old Peter returning to us, I don’t know what is. He’s not out of the woods yet, but this episode has all the makings of the miracle we asked for. While the cancer battle wages on in the background as a long miracle in the making, Peter has thus far thwarted a quick and deadly strike of ARDS. Survival is a miracle in itself, but ARDS can cause many other problems; His blood carbon dioxide levels were so high at first that brain damage could result. So far there aren’t any signs of collateral complications.

On a side note, I picked up the t-shirts over a week ago, but this is my first day at home since. So I’m starting to package up the orders now for delivery this week. They’re coming! Promise.