Peter’s Page

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.

All in all, it was a good day. This morning when I arrived, Peter was off the BiPAP (big face mask) and just had the oxygen in his nose. Throughout the day he rotated between the BiPAP and nose oxygen every two hours or so. He started the day pretty jittery with withdrawals from the narcotics and progressed steadily into the afternoon. In the late afternoon Peter was as alert and interactive as we’ve seen him.

And then he suddenly threw up. He felt well after he did, but then he vomited a couple more times in the evening. This can be a symptom of withdrawal from two weeks of meds, but it’s still a little scary. He doesn’t have a fever or anything.

One highlight today was when he told Ty and I that he wanted to stand up (in his scarcely used faint voice). Together we lifted him beneath his arms all the way up to his feet. He worked his feet beneath his hips, still on the bed, and held maybe 3/4 of his weight for about five seconds before giving out. His muscles have atrophied significantly. Overall it was a comfortable day and I expect it will be even better tomorrow.

Peter had a chest x-ray around noon that showed his lungs weren’t as inflated as they’d like. Although it didn’t cause any alarm, they put him on the BiPAP (a bigger face mask that gently assists breathing) as a proactive measure. He was doing well without it, but they want slightly bigger breaths to keep the lungs inflated. He also had a fever in the early afternoon, so antibiotics are being administered.

Overall he’s doing great. His fever has been gone during the late afternoon and evening. Shortly after the fever broke and he woke up, his parents coaxed a few smiles out him with some friendly teasing. It’s hard to see the smiles beneath the mask, but they were there. When he’s awake, which is less than half the day, he’s often agitated or uncomfortable. During this time, he’ll roll himself over, kick his legs, try to boost himself into a sitting position, or try to lunge himself further up the bed. It’s not fun to watch him struggle, but we decided this type of agitation is great, because he’s using his muscles, his heart rate rises, and he’ll be naturally pushing his lungs along. In that context it’s phenomenal to see him so active.

Before we left tonight, we had him smiling more. He’s by no means chipper. But he’s on his way.

To all of you, Peter sends a “thumbs up”.  This was taken late evening on Wednesday (his left thumb has a monitor taped to it).

Peter spiked a fever during the night, but it was quickly controlled and the plan was only slightly delayed. At about 9:30 AM eastern, the breathing tube was removed. We had to leave the room, which said to me that it can be a bit of a process, but it took less than a minute. We returned immediately to find Peter calmly breathing on his own under an oxygen mask. Ten minutes later, the oxygen mask was removed, replaced by a simple oxygen tube that blows some oxygen in his nostrils.

It was exciting to see more of Peter’s face and an unobstructed mouth and it’s very exiting that he’s breathing just fine and keeping his critical numbers in check. Since the excavation he’s had bouts of discomfort. We expect him to just tell us what the problem is, but sound and words remain difficult. It could be general discomfort in his throat or lungs, it could be withdrawals from the medications. But the spells of discomfort haven’t lasted too long. When I left to write this post, he was napping peacefully.

We don’t know what the next steps are, but little things would mean so much. His first sip of apple juice will be triumphant. Maybe he can try that in 12 hours or so. The staff is impressed with his progress and equally impressed with his demeanor. He’s cute, sweet and cooperative under very uncomfortable conditions. Imagine if they met the real Peter.

We found out about 30 minutes ago that Peter’s great grandpa Art passed away peacefully this morning. As Ty said, “Now Peter has one more angel watching over him.”

After spending more hours bedside I can provide more details on exactly how Peter is doing. First of all, he looks better than he did 7-10 days ago. His tongue used to be sort of swollen right out of his mouth under the paralytic and sedation, but now that he’s frequently awake and alert and his mouth and eyes look a little better. His eyes are very irritated and I think it hurts to keep them open long.

When he would wake up today (Tuesday), his face scrunches up and reddens from various discomforts. His throat may be sore, his bedsore might be irritated, his eyes may hurt, or he may need to go poo, which he’s refusing to do into a diaper (or maybe it just hurts to try). In any case, it’s difficult to detect the exact problem through questioning, nods, and sign language. Ty and Erika show great patience through the frustration. Usually a simple adjustment is made, the redness leaves his face, and he falls back to sleep.

I’ll get an update on how the vent removal goes as soon as possible tomorrow.

Our family had another scare this week. Art Walen, Peter’s great grandpa (also Erika’s and my grandpa, also Grandma Barb’s dad), suffered a major heart attack, or congestive heart failure, in the middle of Sunday night. Grandma Barb headed to the hospital at 2:00 AM Monday morning and upon arrival was told that her dad probably wouldn’t make it. Some time later, Art woke and began lucidly speaking to Barb. He stabilized and is doing relatively well. He somehow didn’t suffer major damage. Peter’s great grandpa and great grandma instilled values into their family that are helping Peter today, generations later. This week Art showed a little fight of his own. Keep fighting, Grandpa.

Peter continues to inch forward, even if things have been a little more “exciting” the past couple days. I arrived in NY last night and spent some time with Peter this morning. The doctor just visited with an update a plan of action. Now Ty and I are at the Ronald McDonald house to use the internet.

Erika posted yesterday morning with an update about the happenings on Sunday. Monday was pretty smooth and the fever subsided. Last night, however, didn’t allow Erika much sleep. Peter was very awake and fighting to get his tubes out of his mouth. He has IV lines in each foot and was kicking at those, as well. Two nurses and Erika struggled to restrain him as he was showing some real strength. It’s not fun to see him agitated or scared, but it’s probably a good thing. The doctors have continued to lower his medications and reduce the vent’s workload. As he becomes less sedated, some fighting seems natural and a sign of life.

The doctor this morning announced the plan over the next day or two. The various medications will be lowered today and then fairly drastically at 1:00 AM (other meds will be given to fight withdrawal). Peter will become more alert and become very agitated, maybe around 5:00 AM. Once he begins to really put up a fight, the ventilator will be removed. Peter will begin breathing on his own under careful surveillance. A BiPAP machine can assist his breathing as necessary, but the breathing will be largely his responsibility.

The longer he stays on the vent in critical condition, the more he risks various infections. The doctor said that the ICU isn’t really a healthy place, so it’s time to push him forward. I don’t think this step would be taken if she didn’t feel good about his progress. His lung x-rays show slight improvement each day and a significant leap compared to this original x-rays. His cultures are negative at this point and his temperature is under control. If any of these things change for the worse today, the plan would likely change.

It should prove to be an interesting 24 to 48 hours. It will be a serious challenge to Peter. It will be challenging on his parents (and me), since we’ll probably see him uncomfortable and possibly scared. Yet it is very exciting that he may soon be back to supporting himself and marching on towards his next challenge.

The photo below is the night before his last surgery, with Dad, in between skeet-ball games.

Sorry for not posting yesterday. Peter slept all day – there is a difference between his sleeping and awake state, even though he is sedated. We were chalking it up to the fact that they were really pushing him on Saturday, with “C-Pap Trials/Sprints”. This is where they turn off the vent for 20 minutes and see how he does on his own. They were very impressed with how he did, although he’s not ready to come off the vent yet. His CO2 levels are still too high, meaning he can take little breaths, but not big enough ones. Anyway, we thought doing those over a 24-hour period may have worn him out. Also on Saturday night, they stopped his antibiotics as all tests had been confirmed negative (meaning we do not know what caused the lung sickness/ARDS). Last night he got a fever – 102.6. They drew cultures right away and gave him tylenol and it went away, and they turned up the settings on the vent to let him rest. He has remained at those settings overnight and they didn’t do any more C-Pap sprints. Not sure if they will do any more today, or wait to see if he gets another fever tonight, etc. We hope this will be a very minor setback. We want nothing more for him to get off the vent and yet we understand this is going to be a huge step for him and they have to be very cautious. They said his amount of lung damage would take a normal person months to recover from, so considering his immuno-compromised state, it will be a long recovery. He will need rehab and PT to be able to walk again, and possibly to even be able to eat and do some “simple things”.
He has been doing so great and we tell him that all the time. He did nod yes to Ty last night that he was scared, so we’re not sure if it was due to the fever or just being a little “awake” and realizing he’s hooked up to so much. Either way, we are trying to help him be comfortable and know he is making progress. Thanks again to all of our family for being out here in “shifts” since this all transpired. It is a wonderful distraction and we know Peter is enjoying all of your company too.

I told Ty I thought he did a great job of expressing our sentiments on his post yesterday and he said “the only thing I forgot was to tell everyone how he is doing today!!!” So this is going to be short and sweet but he’s doing pretty well. He is no longer paralyzed but is pretty heavily sedated still. They are really challenging him with the vent settings – trying to wean him while maintaining safe numbers (we see this as a positive since he hasn’t shown any signs of not wanting more challenge). While he MAY be ready to get off the vent in a week or so, we are getting the impression that his overall recovery will take quite some time. They are not ready to give any timelines yet as he is still in “critical condition”. So we are just trying to stay focused on this recovery (lungs) and will deal with further cancer treatment when the time comes. They are going to try to put a feeding tube in again today. They tried 5 times last week because it is much better to give him food directly into “the gut” than through IV, but it is very difficult to get it down and placed right. The most frustrating thing on a daily basis right now is Peter, when he does wake, is trying to talk to us. It’s hard to see him try because no words come out, and considering he has 2 tubes coming out of his mouth, it’s impossible to read his lips! So we encourage him to relax and we ask him a lot of questions to which he nods or shakes his head. Overall, we couldn’t be more happy about the direction he has gone over the last week.

As has been mentioned numerous times in recent days, today represents the 1 year anniversary of Peter’s orginal diagnosis. I can remember Erika’s trembling voice on my cell phone telling me they saw “something” and we had to get to the University of Minnesota right away. That night was the first time Erika and I were told Peter “likely has cancer”. Up until last Wednesday, August 17, 2006 was far and away the worst night of both our lives. You are all very much aware of what the last year has been like for all of us. We have experienced every emotion know to man, sometimes over weeks and months, sometimes over minutes and hours. Erika and I have often spoke about “what does this all mean, or what have we learned during the last year”?

I am not sure if these questions will every fully be answered, and I am not sure I am proficient(big word huh Holmsey) enough on the computer to even attempt answers. However, during the past year there are some things that we definately know the answers to.

One, we are certain that we have the most incredible support system in the world. Our family, friends, co-workers, the hockey community, fellow cancer families, and total strangers have been there for us from day one. We have said this many times and we mean it from the bottom of our hearts, “THANK YOU.” We will never be able to repay you, nor will you ever fully realize how HUGE of a role you all played in helping us get to today.

Two, the power of prayer is greater than we ever imagined. Erika and I would not have been able to survive without all of the prayers we have recieved from you all during the past year. The prayers you have given to God on our families behalf are the greatest gift of all. I know that Peter would not be where he is today without all of the prayers he has gotten over the past year. Please, keep them coming God is listening!

Three, Peter has been afforded unbelievable healthcare. The Doctors and Nurses etc. who have been involved with Peter have been nothing short of remarkable. From the early detection at Brainerd Medical Center. To the months of treatment at the University of Minnesota and the current care he has gotten at Memorial Sloan Kettering and New York Presbyterian Hospitals. All of the Doctors, Nurses, Technicians, Child Family Life Specialists and countless others have all given of themselves to help Peter.

Finally, this website. It is just as important to us as it is to you. We draw strength from it and would be lost without it. As you all already know, “Uncle Matt is a SAINT” Everyone who has come in contact with this site is a better person for reading it.

My intention was not to make this too terribly long, so I will end by saying that Erika and I consider ourselves the luckiest parents in the world. We have 3 wonderful gifts in Peter, Ellie and Kate. We have wonderful families and incredible friends. We know that we have seen numerous times over the past year where we have seen others in a similar situation who were not as fortunate as we are. They may be a single parent, they may be a child who rarely has visitors, or perhaps a family who has no insurance. Or a patient who’s treatment has not gone according to plan. There have been countless times we have walked silently down the halls of a hospital and held hands knowing how truly blessed we are.

Please have a great weekend and God Bless all of you,

Erika and Ty

Erika and Ty are understandably nostalgic today. It’s exactly one year since Peter was diagnosed and “Cancer” became a member of our family. They are going to post something a little later today when they have computer access.

In the meantime, Matt has assigned me the daunting task of writing updates over the weekend while he is out of town. I know I’m stepping into some very big shoes.

I thought I’d begin by filling you in on Peter’s sisters, Ellie (3+) and Kate (almost 2). They are doing remarkably well given the circumstances of this past year. Except for Kate’s runny nose, they are healthy and happy. Just this past week they’ve begun playing very nicely with each other. It’s been wonderful!

Peter isn’t the only Eigner to display a resilient spirit. I’ve been waiting for the day when the girls (in their own way) say, “I want to go home. Just take me home.” But so far that hasn’t happened. They were thrilled to see Mommy and Daddy last weekend and spend some time with them, but they said goodbye without a tear.

Ellie has become the little mommy, and Kate is the little Erika (Tilly Tornado II). It’s deja vu for us on a regular basis. They’re both strong (we’ve never seen such climbers) and spirited (“I can do it!”) and unbelievably good singers.

Grandpa and I are blessed to have had the chance to watch the girls grow and change. They’ve become a very precious part of our lives.