Hospice - Don't Panic

I'm sure those of you who frequent Mashed Potatoes are wondering what the story is with hospice visiting Max. Well don't panic. The staff at the oncolgy clinic thought Max benefit emotionally from a break to all his trips to clinic. Currently he's going to clinic twice per week for blood labs, transfusions, doctor checks. His counts are always questionable so he also needs to wait around to see if a transfusion is neccessary. This alone can equate to 3-4 hours. Add to that a transfusion and he's there all day.

It's been 3-1/2+ years that Max has been going there and he's simply sick of it. We used to play games, read books, draw, watch movies, go to the school room or playroom. No more. He just sits on the bed and watches super mindless TV.

The goal is for the hospice nurse to draw Max's labs here at home and delivery them to clinic. If Max needs anything, clinic will call me and let me know when to bring him down. Could it really be that simple? I hope so! I think we're all looking forward to more time at home.

Food is not a Surprise

Sunday night we had "Happy Sunday to Us!" party. (Do you really need an excuse to have a party?) Andy had been to the market, picked up crab for Max, shrimp for Hannah, and big chunk of 4-layer chocolate cake to share. When dinner was over we broke out the cake and told the kids, "We have a surprise for you! Come to the kitchen!" The three kids closed their eyes... the suspense was killing them! We lit a candle on top... "okay, open your eyes!"

"Yay! Cake!" yell Hannah & Nicky.

Max looked at us like we were dumb as rocks. "Food is not a surprise for me."

Andy & I exchange looks that say, "We are dumb as rocks." Then we open the emergency new toy cupboard and produce a new surprise. We were rewarded with a smile. Whew!


Your Comments

I can't tell you how much it means to me to get an email alert that we've received another comment on the blog. Just so you know we do in fact read everyone - because we receive them in our email as they're posted. Even the littlest "Hi" gives me a feeling that you're all out there, keeping up with Max, and that there is love and caring all over the place for our boy, even when we don't talk to ya'all all the time. Really, it's wonderful, heart-warming, and somehow strengthening.

Thank you.

Now if I could just find a few minutes to write a good post!


Official Scan Reads: MIBG - CT - MRI (updated)

These are the official reads of Max's CT, MIBG & MRI scans last week.

CT HEAD w/ CONTRAST: volume scanning was performed through the entire brain after intravenous contrast adminsitration. Image data were displayed in the axial, sagittal and coronal planes. Comparison is made with examination of 06/10/08. Comparison is also made with non-contrast head CT of 7/14/08. Ventricles remain normal in size. The calcified midline frontal epidural mass consistent with metastic disease to the skull has decreased in size since the examination of 06/10/08 and does not appear to be significantly changed since the more-recent exam. The mass now measures approx 2.6cm in maximum dimension. Appearance of the brain is unchanged. No new intra-axial or extra-axial masses or areas of abnormal contrast enhancement are identified. No abnormality of the brainstem or cerebellum is noted. IMPRESSION: decreased size of frontal epidural mass consistent with metastic disease to the skull. Findings are otherwise unchanged since the previous exam.

CT CHEST w/ CONTRAST: Volume scanning was performed through the entire thorax after intravenous contrast administration. Image data were displayed in the axial, agaittal and coronal planes. Comparision made with exam of 06/10/08. A port-a-cath remains in place with the tip in the right atrium. Previously identified right hilar mass which demonstrates relatively low density has decreased in size. The mass mow measures slightly greater than 1cm in maximum dimension. Calcifications may be present in the right hilar region. No new mediastinal masses are idenitified. Previously identified low-density mass adjacent to the left hemidiaphragm appears to be slightly smaller. However, its location makes direct comparison with the previous exam difficult. An area of increasing atelectasis or air space consolidation is present posteriorly within the right upper lobe. Muliple nodular densities are again noted throughout both lungs which are increased in size since the previous exam and are consistent with metastic lesions. These lesions appear to be slightly increased in size and number since the previous exam. The largest lesion now measure greater than 5mm in diameter. Mulitple sclerotic vertebral lesions are again identified which are consistent with metastic disease and do not appear to be significantly changed. Decreased stature of a mid thoracic vertebral body is again noted. IMPRESSION: increased size and number of pulmonary nodules consistent with increas in metastic disease. Right hilar and left diaphragmatic masses appear to be slightly decreased in size. Multiple thoracic metastases are not obviously changed.

MIBG - A total of 3.1 mCi of iodine 123 MIBG was injected intravenously without complications. This exam is compared to the MIBG exam from 6/11/08. Once again, muliple areas of abnormal uptake are seen indicating metastases. In the skull, the lesion seen in the midline anteriorly has decreased significantly since the previous study. Foci of uptade in the left humerous are somewhat less apparent, however, the focus of abnormal uptake in the right humerous is probably unchanged. Further areas of abnormal uptake are seen in the upper chest, probably in posterior ribs. These are unchanged. In the pelvis continued abnormal uptake is seen in muliple locations in the pelvis fairly diffusely. I do not see any significant changes compared to the previous study. The left proximal tibia is once again hot although it does seem to be somewhat less extensive than previously. There is, however, somewhat more prominent uptake in the right proximal tibia and the proximal right tibial shaft. In the distal femurs bilaterally, there is also somewhat increased uptake compared with the previous study as well. Some abnormal vertebral body uptake is also present. This is essentially unchanged since the previous study. It is somewhat spotty and includes areas of abnormality probably at the level of T11 or T12 and probably in the lower lumbar spine. The whole body images also suggest areas of uptake posteriorly in the skull which are unchanged although, again, the area anteriorly is diminished. Some areas of abnormal uptake have decreased, expecially in the anterior skull. There are, however, increasing areas of uptake particularly around the knees. This probably indicates further metastic disease. Once again noted are abnormal areas of uptake in the left proximal tibia. Additional areas of abnormal uptake are seen in both proximal femurs.

MRI Entire Spine w/and w/o contrast. Comparison to 06/16/08 scan. Technique: Sagittal and axial T1-weighted images, sagittal and axial T2 fat saturated images, and sagittal and axial postcontrast T1-weighted images were obtained. FINDINGS: The bone marrow signal is diffusely abnormal. All levels of the vertebral column appear involved with the exception of the sacrum which may be spared vs. partially involved. Of note, there is no intraspinal abnormality. The spinal cord signal is intact. There are no enhancing masses within the canal. There are no paraspinal soft tissue masses. Of note, many of the vertebral bodies are slightly bowed compared to the prior study which represents multiple vertebral body mild compression not unexpected given the diffuse infiltrative involement of the bone marrow. IMPRESSION: Compared to the prior study, there has been interval onset of multiple vertebral body endplate bowing consistent with mild compression fractures, not unexpected given the diffuse bone marrow infiltration of the vertebral column related to the bone marrow infiltration. There is no obvious interval change in the degree of infiltration compared to the prior study.


Dustin Cobb an Angel

We received a note from Dr. Sholler this morning that Dustin Cobb passed away peacefully this morning in his mothers arms... special prayers for them today.

This Week in Review (and it’s only half over)

Let’s start post-Star Wars. Sunday night max woke up 11:00pm screaming and clutching his head/forehead/eyes in pain. This went on for 20-30 minutes with a minute or two of “calm” here and there. It was horrendous. The pain was so bad he eventually threw-up several times. Andy & I didn’t know what to do except give him lortab and wait. We phoned the doc on-call, got his opinion, and drove Max to the ER at midnight for a three hour tour. By the time we were half way there his headache had subsided and he was just sleepy. The next three hours were pretty much a waste of time. Andy and I got a great three hours of sleep that night. Ah… refreshing!

Monday found Max & me at clinic to talk to one of the oncology docs about the previous nights’ ER visit. Decided to get a quick CTscan of Max’s noggin to see what may have sparked the headache. He continued to have two more headaches during the day – not as bad though. He also needed his weekly platelet transfusion which took all day… Beth! Just kidding – I was too tired to be upset. (The joke here is that one of Max’s nurses misplaced his platelet order and we discovered the error…oh, about four hours later. You can see I was really on the ball, too, letting so many hours pass without noticing.) I think Max was comfy hanging in a bed all day after his ER visit. **Max’s CT showed that the skull mass has decreased. Good news. Headache may have been caused by one of his meds.

Tuesday Max went for a physical therapy appointment in the morning, cancer camp from 11:00-3:00, and an MIBG injection at 3:30.

Wednesday was huge scan day: MIBG, CTscan of the head and chest w/ and w/o contrast, and an MRI of his entire spine. Andy & I get to watch the MIBG as it appears on the computer screens and get instant feedback. Max’s skull definitely had less uptake in the area that was radiated. His thighs looked a little less bright as did the iliac crests. Other areas looked the same as the previous scan, with a little more enhancement in his tibia (shins). So from the parent-reading-the-scan-perspective, some things looked better and others looked a little worse. From my perspective, I was somewhat surprised that the whole scan wasn’t riddled with neuroblastoma and that there were spots that had improvement. We’ll have an official reading hopefully Thursday where all the scans are looked at together and compared to old scans.

Thursday will find Max at cancer camp from 9:00-2:00 (hopefully) and back to clinic in the afternoon for vinblastine.

Friday may be the only day Max gets to spend the whole day at camp 9:00-3:00.

So how’s Max feeling? He is constantly nauseated. He carries his barf-bin around like a security blanket and appreciates quiet. His nausea and diarrhea have been going on for weeks. Leg pain persists. Walking is difficult and painful. Decadron, one of the meds Max takes for pain is a steroid and makes being around him like walking on pins and needles… his mood can change from great to crying or angry in a heartbeat. He notices his own uncontrollable moodiness, too, and it makes him sad.


Star Wars: The Max Wars - Coming to a Theater Near You!

The day started out fairly normal. We hosted a cub scout meeting at our house for Max's Wolf Den. The goal was to decifer codes and the boys earned some badges along the way. The meeting quickly deteriorated and the boys were off playing shoot 'em up. I found a box of robes and light sabers along side the house and thinking one of the other parents had brought them, I handed them out.
Shortly thereafter, a stranger appeared in the yard. He said he was a Jedi Knight, Obi-Wan Kenobi, and that Dark Forces were at work in our 'hood. He needed brave and steadfast help. "Would you children be my Padawans?" he asked. Of course! And so a mini Jedi Training course ensued. The kids learned how to move their sabers correctly and how to do Jedi mind tricks! Fabulous and just in time, too! A Stormtrooper came trouncing into the yard. Yikes. He was clearly outnumbered and on a scouting mission for the dark master himself, Darth Vader. Jedi Kenobi showed the padawans how useful the mindtricks are against Stormtroopers. (They loved this!)

"Stormtrooper, dance like a chicken," he said as he waved his hand. And guess what? Chicken dance! They tried a few others like act like a monkey, walk like an old lady, be a bear. Then he snapped out of it and fled. HA-HA!! Unfortunately for the Padawans, the Stormtrooper returned with DARTH VADER.

The Dark Ruler of the Empire agreed to take a few pictures.

But as you can clearly see he was not pleased with this. He even put up with some psuedo-sabering against the young padawans.

This is what happened next... (lucky for us it was all caught on tape)...

Produced, directed, edited, voice-overs, yadda yadda yadda courtesy Daniel Sturt, Max's teachers' husband.
Well, thank goodness DV packed up the Death Star and left, (we found his keys for him), because CHEWBACCA showed up and he was in a great mood. You do not want to be around a moody Wookie - they tend to pull arms off people. Instead, he simply picked all the small children up and talked to them.
No one claimed to have any idea what he was saying, but I think all the men and boys understood perfectly well.

Max loved this. I mean, how can you go wrong with a great big furry Wookie?

For even more photos & videos of all the kids with our guests please click here. These were taken by one of the SDSWS members. Lots of great video clips for the kids messing with the stormtrooper, battling Vader and more!


San Diego Star Wars Society

We need to send a HUGE thank you to the folks from the San Diego Star Wars Society for making a special trip to our home yesterday as a surprise treat for Max and his Cub Scout buddies.

We had a Storm Trooper (Linda), Obi-Wan Kenobi (Jedi Dan, says his license plate), Darth Vader (Felix), and Chewbacca (Grant). **Chewbacca had to take over 45 minutes to get his "face on" for the kids. He was Chewbacca. His jaw moved, he was 7' 3" tall and he could make the Chewy sound!

Andy & I have been in contact with SDSWS since last year and were finally able to set something up. They read Max's blog and wanted to do something special for him... they hit their mark and well exceeded it. As you'll see in the next post down the kids had a hoot. (So did the parents.) Be sure to check back for more and more photos - we had seven parent photographers here!

Thank you to our Star Wars guests who were able to come to our home. You are really nice people and we are happy to have met you. Thank you, thank you, and thank you again. You made a little boy very happy yesterday.

PS to Felix: we hope you think the video is an entertaining as we do. Andy & I had tears coming down our cheeks from laughing. We hope you do, too.


What is Heaven?

During Max’s second full day in-patient for “the fever” we finished book 1 and started book 2 of the Little House on the Prairie series. He really likes this stuff. There are lots of wild animals and hunting stories, bee hives, bears and panthers, creeks to ford and possible Indian sightings. In the last chapter we read this afternoon the family was trying to cross a swollen creek. When they finally reached the other side Laura realized that Jack, the family bulldog, was nowhere in sight and probably drowned trying to follow their wagon across. She was very upset and wanted reassurance that such a good dog had a place in heaven.

Max rolled over slightly to face me from his hospital bed and said, “Mommy, what’s Heaven?”

I was slightly stunned perhaps because of the setting, perhaps because of the timing, perhaps because I want to know exactly what Heaven is sometimes, too, knowing that my son may be there alone, without us someday.

I answered, “Heaven is where people go when they die. Gramma Chris is there.” He nodded – he knew that from before. I had to stop reading then. Emotions overtook me and it was all I could do not to cry. My eyes brimmed with tears.

Max rolled back over and fell asleep.


Neutropenic Fever

Yay - every cancer parents' favorite occurrence. Neutropenic fever is when your kid has an ANC<500.>101 = overnighter in hospital for at least two days, up to ten days. woo-hoo, no exclamation point.

Yesterday afternoon Max put himself down for a nap on the couch. When he woke up I thought he felt a little warm. By the time I got back with the thermometer he felt really warm. His temp was 101.5 yuck. So we made the appropriate phone calls, packed an overnight bag and movies and Max & I headed out the door with Nicky screaming in Andy's arms that he wanted to come with. (Hannah was at a friends house having a great time.)

By the time we got half way to the hospital I could tell Max was feeling alright because he was chatting like a parrot in the back seat. Hmph. He had no temp when we arrived, but this is a scary occurrence and kids can get really sick at times like these so we aren't going to take any chances and blow it off.

Got Max all checked in, drew a blood culture and labs and settled in for a good nights rest. ha ha.

Andy & I spoke with the doctor on the floor this morning, Dr. Ahn, and the hypothesis is this regarding Max's abdominal pain:
Rapamyacin (which we already believe is causing his diarrhea and tummy pain) causes inflammation and deterioration of the intestinal lining and severe tummy cramps and pain in general. In order to correct this problem we need to introduce really slow formula/pedialite feeds continually throughout the day. We'll also add glutamine back to his diet (Max was on glutamine while on rapa prior to this and we wonder if that's why he didn't have such a reaction the first time around).
We'll have to wait to see what the outcome is, but it certainly makes sense. Regarding his low ANC the doctor has also ordered IV gcsf to bring up his white blood cell count. Max is feeling fine for the most part. Certainly not feverish and yucky feeling, so we hope that with the gcsf his counts do come up and then he can most likely come home tomorrow.


Weekly (ha ha) Update

Thursday, July 3rd: Where are we… let’s see. It’s been a tough two weeks (emotionally) and I expect that to continue. But let’s start with today: even though Max and I are spending the day in clinic his attitude and mood are great.

Max, Nicky and I dropped Hannah off at Surf Camp 8:30am and headed up to Starbucks for hot cocoa and bagels.

Hannah's surf camp team photo (she's kneeling on the right of the instructor/red hat) - she did great and definitely got the 'stoke' by standing up her first day and continuing to improve throughout the week.

We picked up an extra dozen for his buddies at Radiation which was the next stop… a follow-up visit with Dr. Murphy, Max’s radiation-oncologist. Max loves his radiation techs and wanted to give them a present so we settled on bagels. They were very thankful! Nothing new at radiation – just a follow-up meeting with the doc.

Next stop was clinic. Max was due for Vinblastine, cbc’s and pee-in-a-cup. Platelets were low so we’re hanging out for a transfusion, too. We arrived at 10:30, Nana picked up Nicky for the day, and we’re still here at 3:30 and the platelets haven’t arrived yet. Yes. It can really be a long day. At this rate Max won’t be done here until after 5:00.

Max has been battling diarrhea the past two weeks, possibly from rapamyacin. We dropped it a few days ago and waiting patiently to see if it was the cause. He was having severe abdominal pain with it – not fun to witness when you can’t do anything to help. Yesterday that let up, but the diarrhea continues. He hasn’t had any ‘nutrition’ in several days and is living off of pedialite.

His body aches and pains seem to be more under control currently thanks to methadone and lortab with an occasional dose of decadron. His walking is labored – but he is walking. We haven’t used the wheelchair since the last week of school.

As for treatment, Andy usually does the write-up on that, but I’ll give it a shot. We’re giving Max a one week break from toxic treatments. Hopefully his marrow will start producing again. It’s scary to know that your child is dependent on blood products. A place Andy & I never wanted to be. Next Thursday we may try a new combo or cocktail as we like to call it: Cyclophosphamide & Etoposide, w/ a twist of Vinblastine. We’ll be replacing rapamyacin with cyclophosphmide possibly. We’re still trying to determine if the rapa is the cause of Max’s diarrhea.

Friday, July 04, 2008: we just returned home from a great BBQ at our neighbors home who also have a great view of the fireworks at the fairgrounds from their backyard. The Thurstons help us all the time with Hannah when Max needs to make hospital appts. They are wonderful neighbors and friends. We’re lucky to have them!

Hannah at the Thurston's pool, overlooking the Del Mar racetrack/fairgrounds where the fireworks show happens.

Nicky enjoying the party and what appears to be a scotch and soda... remember, he's a third child and the brother of a cancer fighter... as such, he's generally left to himself and has advanced accordingly during all the unsupervised time he has.

The kids also participated in the Del Mar Powerhouse Park 4th o’ July decorated bike parade this morning and we spent a few hours at the beach. All in all, a wonderful summer day!