Digestion Problems

You didn't actually think everything was going perfect, did ya?

Yeah, Max has been having some digestive problems over the past 3-4 weeks. To preface this topic I'll remind you that he started his nightly g-tube feedings about 8-9 weeks ago and put on almost 7 lbs... he was up to 17.7kg! The feedings consist of a special formula similar to Ensure that is specifically for tube feeding. About 3-4 weeks ago he started getting diarrhea everyday that wasn't necessarily connected to chemo. Shortly thereafter he began throwing-up. He'd wake at midnight, throw-up all the formula he had just been giving over the past 5 hours - with none of it even looking curdled or digested. Or he'd do the same thing first thing in the morning. It was inconsistent timing and, again, not really connected to chemo.

So we switched his formula to an elemental type (meaning it's completely broken down so your body doesn't have to actually work to digest it). The vomiting continued for a few more days, then stopped, but the diarrhea has continued. His weight is back down to 16.9kg telling us that his body is not digesting the formula. It's flushing right through his system.

In an effort to figure out what's going on we've suspended his feedings (per his doc) and all of his supplements for this week. We're also going to see if we can have his g-tube button changed out. This is an easy thing to do: the nurse deflates the balloon on the inside of his stomach via a hole located on the outside of the button Photo. Pulls the whole button out and replaces it with a clean, new one, inflating the balloon through the same hole. The nurses told me these buttons get quite gross in there and I'm seriously wondering if this isn't the cause of his problem. Apparently, they will last from 1 to 8 months before needing a change. I'd say we're ready and I'm bringing one to clinic tomorrow. This ought to prove fun as Max still hasn't let anyone touch it!


Chemo IX & "Miracles for Max" start TODAY!

Took Max to clinic this morning with a full agenda:
  • Get CBCs taken asap
  • Start pre-hydration in case his CBCs are good enough for chemo to start
  • Get doctor check done asap
  • Get Max back to school asap for Hannah & Max Day and Miracles for Max fundraiser kick-off day
  • Pick-up Max at noon and head back to clinic for chemo

All of these things happened just as I had hoped with the help of the awesome nurses at the hospital. They were happy that Max was having a special day at school and wanted to help get him there as soon as possible so he could enjoy part of it. Max was in school at 9:45! Nice work! I already received the call that his CBCs are great and chemo can start today as scheduled. I'll pick Max up at noon and head back down to clinic for a late start. He should be finished up around 6:30-7:00 tonight. Well worth it though!

The Miracles for Max fundraiser starts today, too. Ms. Weitz, Max's kindregarten teacher, has put together a wonderful fundraiser through-out our school and community to help raise awareness and much needed money to fund NB research. The fundraiser will run from today through June 8th at Max's school with all proceeds going to the Magic Water Project. Thank you, Ms. Weitz!

Big Bear or Bust!

No bust! The weekend was great! Andy took Friday off for an extended weekend and we headed up to the mountains with the econo-liner filled to the roof.

The cousins (Chase and Hallee) were already there to greet Hannah, Max and Nic and the fun began right away with a pinecone hunt that continued all weekend and developed into "art" in the front yard. Hannah and Max both made friends with a very large dog, Bear, who wandered the neighborhood as well as Max-the-Pup, my sisters' dog, who they are typically afraid of. (My kids are terrified of dogs FYI.) They got dirty, played Star Wars with sticks, went on a nature hike and made animal track casts at the Discovery Center, went fishing (no luck!), took a spin on the Alpine Slide, stopped at a Hot Rod show, and had a pontoon boat ride! Whew! All in 2-1/2 days! (Lots of photos on the kid friendly site.)
Dad and Mom had fun, too, hanging out with the kids and the rest of my family. We all stayed in one house that was just big enough for 11 adults and 7 kids. That doesn't mean everyone got their own bedroom ;-) ...although we did somehow!
Good adventure weekend.


This Week's News

For some reason we've had very busy week. Here are the highlights:

8:00am clinic day. Expected Max to need red blood and he did. Had a quick check-up and waited for the blood to arrive. Made it home by 3:00!! Yes - this is considered a great day. Max is still having disgestion issues. Spoke with the nutritionist at the hospital and came up with a few ideas to hopefully remedy the situation. #1 was to elevate his head more for his overnight feedings. #2 is to stop the fish oil for a week. #3 adding papaya enzyme. Will post more when we find out if any of these ideas worked!

Max's blood counts were really low yesterday: virtually no white blood cells (no germ fighting ability) so he had to stay home from school. He found out that mommy and Nic don't actually spend all day playing. We had three short errands to run and he barely made it through. He's quite the complainer ;-). We decided to give Max some GCSF shots to boost his white cell growth. All he wanted to know was what his prize was going to be. He came down with a cough last night and had a slight runny nose to boot today (although it's hard to have a runny nose with no white cells). We hoped he wouldn't get sick, however...

This morning he woke with a fever. Ugh. For those of you not-in-the-know on the chemo-fever: if Max spikes a fever of 101.0 he has to be treated in-patient with IV antibiotics for up to ten days. mm-hmm. F-U-N. So I packed an overnight bag for Max and I, and another for Nic to stay at Nana & Tata's house. Got everything together that I thought we'd need to stay overnight which took me an hour longer than I thought it would, but with Nic/godzilla destroying everything in his path it makes sense now. By this time Hannah's long gone to school with our wonderful neighbors, Jenna & Melissa. Max actually slept until I had everything ready to go. We were out the door at 8:50am. Max chatted happily in the back seat all the way there... hmmm, isn't he feeling sick? Turns out his fever went away all by itself (awesome!) and he just had to stay in clinic long enough to get a precautionary antibiotic and have his temp taken a few more times. Hooray - we get to go home! Made it home by 3:00 again today!

Going back into clinic for a post-Wednesday check-up. Not expecting Max to need any blood products as his counts are on the way up according to Wednesday's lab results.

If everything goes right, we'll be heading up to Big Bear for the weekend with my whole family. The kids will have a great time with all their cousins as they usually do. I was suppose to get all the packing done on Wednesday. Ha ha. A long, relaxing weekend away from home is on the horizon.


Mr. Inspiration

This evening Max was the recipient of a very special award given by his school district. One child from each grade, at each school, is chosen for their special efforts to receive an Inspiration Award. Max received his for courage and effort. This is what his teacher, Ms. Weitz, wrote about him:

Max Mikulak is a true inspiration of courage! He is currently undergoing chemotherapy for recurred neuroblastoma, Stage 4. Anyone, and everyone, who meets Max is awed by his positive attitude and kind spirit. When he is able to be at school, he participates 100%, never letting his symptoms get him down. Max is always willing to share his experience, either through his "blog" or just with his words and he always does it with a smile on his face... his is truly courageous!
We think so, too.



-----Original Message-----
From: Bob Tressler
Sent: Tuesday, May 15, 2007 12:16 PM
Subject: FUN: More about Bryan

Hello N-BLAST family! I chose the heading "FUN" because we had the most beautiful ceremony for Bryan, truly a fun celebration of his life.

Let me tell you how Bryan left this world. He did not die from cancer.
So for all of you who might lose a little hope with Bryan's passing, don't. His nb had been turned around by Dr. Sholler. We'll never know how far Bry could have gone in that direction. Maybe ned once again, maybe not. But it was headed the right way. Bryan died from a bacterial infection. It could have come from when he went to the bathroom, it could have come from one of us not having our hands clean enough, it could have come from his own body. We'll never know and we really don't care. We have a strict policy of not looking backwards and beating ourselves up over this or that. This has gotten us through nearly 9 years of this grueling battle, and it will get us through the rest of our lives.

Bryan and Mary Lou started that Monday morning the same as always. They packed for the week and headed for Burlington, 2 hours away. At the hospital, Bryan was hooked up to the usual monitors while he was getting treatment. There was nothing unusual going on. Bryan was talking about making corn dogs for the staff that week (he made quesadillas the week before & made $54!) All of a sudden he got very quiet, then the alarms went off. He went into cardiac arrest and died right there. No pain, no fear, no knowledge of what was happening to him. For Bryan, if he as going to die, we could not have asked for anything more merciful than that. But the docs were able to revive him. He was intubated and put on a ventilator, and heavily sedated. This bought us enough time for me to find our other son and drive to the hospital. It also allowed time for our daughter to get a flight from Manhattan to Burlington. She got in at
1 am. We were all there to help Bry through the transition from this world to the next. Now, before Jen got there, I guess around 11pm, Bryan's blood pressure started to fade dramatically. It looked as though this would be the end. Then, two child life specialists who were very close to Bry came in the room. They started chattering at him as if nothing was wrong. They talked about corn dogs, scrabble etc. His blood pressure shot back up to normal levels!! The doc confirmed that, although he was sedated and couldn't speak or see, he could hear what was being said to him and he could respond. What a gift that was to us!
From then on, when we spoke to him, he would occasionally squeeze our hand. We just knew he was hearing us.

So, we urged him to fight. And he did. He made one more big rally in the wee hours, but it became clear that would be the last one. Doc Sholler, as caring & wonderful as anyone I have ever met, stayed overnight in the room down the hall. She checked in on us often, and was back in the room full time before 6am. We felt such comfort as she guided us through what was happening to Bryan. Even though she told us his blood labs were getting worse, we continued to urge him to fight. And as he squeezed our hands, we knew he was giving it everything he had. Then, a little after 7am, Giselle told us he was going. As a family, we all put our hands on him. As a family, we all told him we loved him. As a family, we all told him it was ok to stop fighting. And then we all had our personal words for Bryan. I'm not sure what my other family members sad because I was focusing on what I needed to say. I knew I only had a few seconds to tell my son the last words he would hear from me. And so I told that I knew he could see Jesus waiting for him with open arms, and to run into His arms right now, don't stay here any longer. And he shuddered, ever so slightly, and then he was gone.

I will live the rest of my days in peace knowing that my family delivered Bryan to Heaven. I thank God for being so merciful to him and us. We are healed as a family, and Bryan is healed from cancer.

We did not mourn Bryan's passing, rather we celebrated is life. He touched so many people and had a profound and, in some cases, life changing impact, that we rejoice for the time we had with him. He served God's purpose for him here on earth, and now he is enjoying his reward.


Bob Tressler, forever proud dad to Bryan. I am humbled in his presence.


Round 8 - post chemo wrap

Whew! Busy week. Here's the highlights.

Max breezed through his chemo this week.
Though he's feeling more nautious that usual and has NO appetite. Yesterday he ate a couple of M&M's, and a few sips of plain chicken broth at dinner. Thank goodness for the g-tube, though that's been making him a little sick lately too.

Family day at Children's Hospital San Diego.
Not what you think. Instead, we had the rare treat of having two kids in the hospital at the same time for different procedures - Max: chemo and Nic: hernia operation. Nic sailed through the operation and was out of there before noon, on his way home, and today (Sat) is doing fine with no known pain (Tylenol with codeine helps that).

MagicWater Project.
Two good things happened. One is Neil (www.TeamSam.com) and I met with Max's onc Dr. Roberts and we're going to try to open the Nifurtimox trial that Max was on in Vermont, here at RCHSD. That won't help out Max but it will help out some other kids with NB who may not be able to travel to Vermont or St. Louis (which is opening the Nifurtimox trial June 1). And, the hope is that we'll bring more trials that can help Max from Vermont to RCHSD. Another good thing that happened is that we're finally getting the MagicWater Project Fund going at the San Diego Foundation. This will enable us to get more low-toxicity trials going to keep kids like Max, Sam, Penelope and others fighting their cancer without blowing out their immune systems or internal organs. More info coming soon.

Max chillin' on Friday night in the playroom.

Walking to Max's Thursday night Kindergarten performance at his school.

Finally, lately Max has been having his own little Friday night dance party. Especially after such a busy week and his chemo, its great to see him with such energy, if not mad skillz, on the dance floor.


Geeta Anand - WSJ Reporter on MSNBC

The "Saying No to Penelope" story from last week's Wall Street Journal.


"Bryan is gone"

And so this long journey has ended. Bryan's incredible fight for life has been defeated by a bacterial infection which took advantage of his weakened immune system. Bryan left this world peacefully, not in pain. His family was with him, we all had our hands on him, and he knew we were there to ease his transition from this world to the next. When it came time for him to stop fighting, we all had our last words for Bryan. Words of Love, Peace, Strength and Comfort. My own words to him were to look for Jesus, to see Him standing there with His arms open waiting for him, and to RUN to Him.

And then he was gone.

Mary Lou and I are priveleged to have called him son. Jen and Bobby are priveleged to have called him brother. And anyone who ever met him, who's lives he touched, are priveleged to have known him. We all stand in awe of this incredible young man.

We will love you always, Bryan. And we will be with you again soon.

Dad, Mom, Sister, Brother

Melissa and I met Bob Tressler, Bryan's dad, in March at the Vermont Conference. He was too nice a person to have this happen to him. Bryan was on the Nifurtimox trial too, I think he was #3 or #4 and Max was #2. We just missed him in clinic while we were there. I love the pictures of Bryan on their website: http://www.caringbridge.org/ny/bryan/


Nutrition update

Max's nutrition has made an amazing recovery from four weeks ago. You'll recall at the end of March post that he had just received his g-tube and was still suffering the effects of not eating much for a few weeks plus the flu. We had also come to find out that he was osteopenic, meaning he didn't have enough minerals in his bones. The g-tube is amazing. Max weighs close to 40lbs now and has more energy. He's gaining muscle mass and his limbs don't look so painfully skinny. His face has filled out and he smiles a lot. Across the board, his calcium, mag, and phosphorous are within the upper range of normal, which is good. Further, his blood counts were high enough that he didn't need a transfusion this week, which I'm attributing to the daily doses of 8mg of melatonin he's getting at bedtime, which has been shown in studies to stimulate platelet and WBC production.

With this round 8 of chemo (which he started today), we are going to try skipping the G-CSF shots post-chemo and see what the melatonin can do on its own. If it works, we may stick with it as we think the G-CSF shots might be responsible for some if not all the mild leg/joint pain he's been experiencing lately.



Ya Can't Let Cancer Ruin Your Day outing #1

Inspired by Syd Birrel (www.JamesFund.ca), whose son James coined the phrase, "ya can't let cancer ruin your day," I rented a convertible to take Max to the Wild Animal Park this past Saturday.

Max getting ready for the open road.

Cruising past Lake Hodges, between RSF and Escondido.

What day at an animal park is not complete without Spongebob?

On our way to the new "heart of Africa" ride which takes you around the park.

Max the bird.