Mo-Health Update

Sunday, 9/07/03
We have decided to have Mo's surgery performed by the staff at St. Judes Children's Research Hospital in Memphis. Actually, Dr. Boop, the surgeon who will perform the surgery is on staff at St. Judes, but the surgery will be performed at LeBonheur Children's Medical Center, a separate hospital located near St. Jude's in downtown Memphis. Mo will be admitted to LeBonheur, I'm not sure if he will be transferred to St. Judes after surgery. Anne, Mo, and I will be flying to Memphis on Monday (9/8) morning. We will meet with Dr. Boop and an Dr. Gajjar, an oncologist at St. Jude's, on Tuesday. Mo will then be admitted to the hospital, an MRI will given for use with one of the high-tech surgical devices (frameless stereotactic microscope) which may be needed to help find the growth we want to remove. The surgery will take place on Wednesday. If all goes well, Mo could be discharged in 3-5 days. I'm not sure if he will be ready to fly home right after discharge or not. We have begun discussions of what therapies lie ahead, but we won't know until after the surgery and the biopsy of the tissue which is removed. Once again the paint has been washed off the canvas of the future; we will let you know as soon as we can see a new picture. I am hoping to update the website from Memphis. As I mentioned in the last post, our Summer finished with a bang. Here's a glimpse of our adventures:
Saturday, 8/16, Afternoon During July and August of this year, Karate America, the school where Mo and Becky study Karate, held a fundraiser for the UW Children's Hospital. One of the activities was a "kickathon", where the students collected pledges for the number of kicks they could kick in 15 seconds. Mo and Becky came in first and second in dollars raised (thanks to a little help from Uncle Steve). At the end of the fundraiser they held a Kicknic, attended by students from several of the academies, where several more fundraising activities were held. Because of his fundraising, and especially because of his Blackbelt attitude in dealing with cancer, Mo was the guest of honor at the Kicknic.
Becky, Bucky, and Ms. Sherman watch Mo present the UW Children's Hospital with a check for $50,000!
Mr. Tracy raises $400 by breaking a stack of 4 concrete blocks!	I gave a short speech at the beginning of the Kicknic, you can read the rough version here.

Saturday, 8/16, Evening Cousin Heather and Uncle Steve visited from 9/17 - 9/21, so they, as well as Grandma and Grandpa Eglash were in Madison to attend the Kicknic. After the Kicknic we headed to Milwaukee to have dinner with other friends and relatives. Partying w/cousin Heather and Uncle Steve. The photographer, the only member of the family not in the photo, is being given the "square" sign for not joining in the dancing.	The scarf is authentic Elvis (who can be seen in the background). This happened to be the 25th anniversary of Elvis' death, so we were treated to an Elvis impersonator at the restaurant, and the guy was good. After dinner some of us joined the dancing and low and behold Mo was snatched away by a blonde who couldn't keep her hands off him the rest of the evening! When we left, even Elvis was addressing Mo by name. I'm going to shave my head before we go back to that place...

Sunday, 8/17 - Lake Waubeesee
Rafting with cousin Heather Out for a spin with cousin Rod.
8/26-8/27
Goodbye party for Mary Brady, who has moved on to greener pastures in Baltimore. Debut performance of "The Hooked Fish" playing Arkansas Traveller (their only tune) in a farewell concert. !!!!Good luck Mary!!!!
Thursday, 8/28 - Lake Waubesa
The final fishing trip of Summer vacation. Mo caught 10 fish in an hour! Note to mom and Dr. Puccetti - we washed all the germs off the fish before he kissed it...
Labor Day Weekend - Chicago
The party of the Summer was cousin Robert and new-cousin Pam's beautiful wedding in Chicago. There were parties and dancing and lots of celebration. I put several pictures into one graphic - here's what you're looking at (top to bottom): 1. Riding in on the Metra train from Harvard Ill. 2. Mo w/Aunt Pam (mother of the groom). 3. Lovely ladies. 4. The newlyweds cutting the cake. Yo Robert - What's up with marrying a woman with the same name as your mother? 5. Uncle Neil and soon-to-be-Aunt Marie (who announced their engagement at the wedding). 6. Two remnants from the seventies. 7. Cousin David (brother of the groom) and soon-to-be-cousin Adeena, who asked Mo to be the ringbearer at their wedding in February. 8. Robert and Mo at the brunch on the day after the wedding. 9. Bad dude at the Harley store.

Sept. 2 - School Begins Mo was definitely ready for school to start, he kept telling people that he wanted "to keep himself busy". I guess fishing, bowling, go-karting and stuff like that get old after awhile... He is showing more interest in school than in years past. He has the same great teachers - Ms. Stimac and Ms. Kebbekus, which makes organizing schoolwork easier as they are already very familiar with our situation. On Thursday, we were treated to a pleasant example of the strength of Madison's community. Two men from Madison Water Utility stopped by to give Mo a late Kickathon pledge to bring the total amount of money he raised to more than $3000! We're not quite sure how it came about, but someone at the Water Utility heard about Mo's fundraising efforts and remembered that he had sent them a card 3 years ago, praising their trucks (He sent out about 20 such cards back then. Not only did he like trucks, but he liked receiving souveniers in the mail). They made a great card which includes a copy of his drawing, which still hangs on a wall at their facility.
What goes around comes around.
Well, this long entry just about brings things up to date, except to add that my friend Abe Megahead stopped by with his telescope on Friday night to show us the moon, Mars, and a nebula near an edge of the Milky Way. It was quite phenomenal, especially the moon, which none of us had ever seen through a telescope before. It was a nice break from a rather hectic week of organizing the trip to Memphis, which we will embark upon in a few hours. In writing these pages, it is my goal to show the positive side of our lives - that one of the challenges of this ordeal is to make an effort to appreciate and enjoy each day. And so, if I could be excused for a bit of a complaint, I would say that I have never spent so much time organizing for something I wish I didn't have to do, and Anne feels the same way. Thanks much to everyone for your support. Several people have offered to let Becky move in with them, watch the dog, or just do whatever they can to help out. I wish there more that folks could do, but there really isn't. Everything is setup, so now we just have to take the steps. We, and especially Mo, are prepared. So as our journey in this landscape takes a turn, this will be the last entry on this page. If possible, I will post an update or two from Memphis.

Tuesday, 8/26/03 - Dad
I'm sorry to have to report that Mo is going to have another surgery. As I mentioned in the previous 2 updates, there has been concern over some changes we have seen on the last 2 MRIs, and we now have several opinions that a tiny piece of his tumor was not removed, and it appears to be growing. While there is a possibility that this is not a tumor, we need to remove it, rather than risk continued growth and possible spreading. There was a possibility that the radiation and chemotherapy treatments would have killed a small amount of residual tumor, but that did not happen and so his chemotherapy has been suspended. Thus we have reached an impasse on our journey through the landscape of cancer treatment and we must find a way around it. After much research, consulting, and advice from other familes who are on a similar journey, we've decided to have the surgery at a hospital that sees more brain tumors than the UWCH, and we are considering going to either the National Childern's Hospital in Washington, D.C., or to St. Jude's Children's Hospital in Memphis. We expect the surgery to take place in 1 or 2 weeks. While this is of course an unfortunate turn of events, I would share a couple of stories from which we are drawing hope and inspiration. First and foremost is Maurice's attitude. We learned about the need for surgery on 8/20, and of course we returned home quite sad from our meeting with Dr. Puccetti. Ultimately each person must come to grips with this in their own way - it always takes time to absorb the information, develop an understanding, and let questions arise. After arriving home, Mo watched cartoons for awhile, as he often does before dinner. After dinner we played a game of scrabble, and later, as I put Mo to bed, he told me that he is not worried about the surgery. He had already put this in its place. He has been through it once and knows that he can do it again. As we have embarked on this challenging journey, we have met others who are also travelling in this landscape. Each family's journey is unique - nobody has a paved road to follow, and the maps are often unreliable. But as we run into each other in this wilderness, we exchange experiences, advice, and support. On Friday, 8/22, I received phone calls from Loice, an ER doctor in Philadelphia, and Lyle, a farmer in Nebraska, both parents of children who have been successfully treated for medulloblastoma. Loice devotes most of her free time to helping families navigate the landscape of pediatric brain tumor treatment. Friday morning began with the daunting task of trying to locate an experienced surgeon to perform Mo's next surgery. After speaking with Loice that task was no longer daunting. A short while after my conversation with Loice, I received a call from Lyle (who had also received a call from Loice). Lyle's 17 year-old son Steven was diagnosed with a large tumor in May of 2002. Like Mo, Steven had some residual tumor which required a second surgery. After surgery, Steven underwent intense chemotherapy treatments. Steven and his mother stayed at the Ronald McDonald House near St. Judes for several months, and Lyle travelled down on weekends. Steven finished his treatments on Jan. 30 of this year and is now working out with his high school football team as he begins his senior year this month. There are no guarantees in the land of cancer treatment (in fact, almost all conversations with doctors include terms from probability like might, should, could, etc.), but the experience of Lyle, Steven, and their family serve as an inspiration and source of optimism. Now with all this unpleasant news, I don't want to leave the impression that we are sitting around and moping. While managing this change of events has slowed us down a bit, we still made it to the Dells last Thursday for a day of go-karting, dining, and ducks, and the weekend before last was full of amazing adventures. However, I haven't had a chance to sort through the pictures, so they will have to wait until next time. I will certainly add an entry to provide the details of the surgery once it has been arranged.
Driving a duck up in the Dells		Getting a pool lesson from mom ( a pool shark in her past life)

Thursday, 8/16/03 - Dad
		It has been a reasonably smooth 4 weeks since our last report. Mo has finished his third course of chemo and has been having all sorts of adventures...

On Saturday, 7/26, Grandma Shari and Grandpa Sy arrived for a weeklong visit. Before they arrived Mo and I headed over to our health club to burn a few Calories. Unfortunately, as we were entering the locker room, Mo slipped off the sidewalk and sprained his ankle. Walking was painful for the next couple of days, putting a damper on physical activity (already at a low level due to chemo). Monopoly with Grandma and Grandpa Rosefelt		Breaking boards at Karate America However, by the end of the week the pain decreased and we were able to play a bit of miniature golf and go bowling with Grandma and Grandpa. Mo capped off the week with a board-breaking seminar at his Karate academy on Friday night (8/1). He had been looking forward to the seminar for weeks, and there was no way that ankle was going to keep him home. He did a great job and had a lot of fun.
On Monday (8/4), the beginning of the first week off of this chemo cycle his energy and appetite continued to be low and Dr. Mo's assessment was that he needed a transfusion (based on how tired he felt). On Tuesday he was checked out at the hospital and low and behold he was correct. He was given a transfusion and also IV fluids as he had become dehydrated due to low appetite. We continued the IV fluids at home for a few days, and just like last time, the low energy and appetite dissipated and by the end of the week his appetite and vibrant self were restored. On Friday 8/8 he bowled 3 games with his friend Mathew Allen and then attended karate class, where only 1 other student showed up, so he practrically got a private lesson from Mr. Murphy, which was great. The improvement in the use of his right arm and leg is very evident when he is practicing karate - a pleasure to see. On Saturday he attended Karate graduation, receiving his blue belt. I would point out that when his appetite and energy are low, Mo is not uncomfortable. We continue to stay busy, doing low-key activities. He still appreciates calls and visits from friends during these times. He began this week with an MRI and an audiogram on Monday (8/11). There continues to be some concern over some changes which are observable on the MRI, but the area is so small that we can't be conclusive as to what they mean. His oncologist remains vigilant and is seeking opinions from other brain tumor experts around the country, including Dr. Roger Packer, who is perhaps the world's foremost expert on medulloblastoma. There is a reasonably non-technical paper about medulloblastoma, written by Dr. Packer, here. The tumor bed (the area where the tumor was removed) is a very complex surface and there are going to be changes over time. In this case we are watching an area which could be scar tissue or could be tumor cells. We remain hopeful and will keep everyone informed.
Mo continued to be busy this week, with tutoring on Tuesday and Karate class on Tuesday and Wednesday. Yesterday, we spent some time picking out a fishing net, so we don't have a recurrence of losing the big one, which happened last Sunday when I hooked a muskie during a fishing trip w/uncle Craig. Mo came home the big winner, catching 5 or 6 panfish. Uncle Craig also caught a few. I went home crying over the muskie, which broke the line when I foolishly tried to lift it onto the pier, rather than letting uncle Craig grab it, which would have been an adventure unto itself...		Looking up uncle Craig's fish to make sure it's a legal keeper.
Today begins a new adventure - a visit from uncle Steve and cousin Heather from California. Plans include hanging out in Madison, the Karate America Kicknic on Saturday, where Mo will be the guest of honor, and a party at Grandma and Grandpa Eglash's place on Sunday. Stay tuned. I hope everyone is having a great Summer!

Thursday, 7/24/03 - Dad

On 7/10 Mo was given a routine MRI and there was some concern over the results. His 3rd cycle of chemo, which had been scheduled to start on 7/14 was delayed and further testing was conducted on 7/15. The results of these tests were negative (which is what we want), giving us and his doctors confidence to proceed as planned.

Chemo was resumed on 7/17 with an overnight stay at the Hotel d'UWHC. Due to some hearing loss in the very high frequency range (a known side effect of one of the chemo medicines), the dose of one of the medicines has been cut in half. This makes the chemo less fatiguing. Statistically, the reduced dose shows no influence on the success of his chemotherapy regime.

Keeping an eye on the ball

Chemo went smoothly and we returned home from the hospital on Friday, 7/18. Not to let the adventure become too uneventful, Mo spiked a fever at bedtime, and it was high enough for his doctor to request we bring him to the ER for evaluation. Even though his fever was dropping back toward normal, we took him in (can't be too careful). It turned out to be a false alarm, perhaps a side effect of the chemo. As we were leaving, we were treated to a dramatic nighttime takeoff of the MedFlight helicopter, unfortunately, it was 2 AM by then...

Despite the late partying in the ER, Saturday found Mo with high energy. In the morning he walked around the Hilldale Farmer's Market and then went hunting for his post-chemo toy. In the afternoon we went to Bogey's amusement park for batting cages and go-carts, and in the evening we ate Sundaes and watched a movie at Mary Brady's house. The movie turned out to be a disappointment, but the evening was saved as Mabel and Basil (Mary's fearless Rat Terrier) put on a world-class sideshow. On Sunday we went fishing at the Memorial Union where Mo was able to flush out a small mouth bass in a place usually filled with quite a few large mouths...

Cooling down the vicious beast

Becky returned from camp on Monday, so once again Mo has a comrade-in-arms at Karate and against dad at the pool.

Yesterday Mo received the second dose of this cycle, which also went very smoothly.

Between the extra testing and the delayed start of chemo, Mo's normal activities kind of splashed out of our lives for a week or so. As things settle down they are flowing back in. This week he attended karate class, had a visit from his friend Michael Reilly, resumed tutoring and drum practice, went swimming, and finished his golf lessons (he is developing a very nice swing). Nobody else in our family golfs, so if someone would like to give him a lesson sometime, please let us know.

Always looking for a reason to party around here

The final dose of chemo for this cycle will be given on Monday afternoon. Grandma Shari and Grandpa Sy will be arriving on Saturday, so I'm sure next week will be loaded with fun activities.

Wednesday, 7/9/03 - Dad
		We are at the end of the break of the 2nd cycle of chemo. Since my last update Mo's appetite and energy have picked up significantly and we have been very busy. Also, the function of his right hand and right leg are showing much improvement, which is very exciting!
Mo has returned to Karate, drum and golf lessons, and the rest of his time is filled with bowling (he beat his dad twice), fishing, , tutoring, go-cart driving, a bit of baseball batting and miniature golfing with his friend Evan, going to dog park, and playing board games. Last week we travelled to Milwaukee to watch the spectacular July 3rd fireworks display over Lake Michigan. Uncle Neil had a party in his condo which overlooks the lake, so we had the best seats in the city! The rest of the weekend was spent relaxing at Grandma and Grandpa's place on Lake Waubesee and attending cousin Michelle's 40th birthday party, which was quite a bash!
Mabel discovers Perch sushi		Partying with some Eglash cousins - 7/4/03

Taking mom for a spin on cousin Rod's motorcycle

Tuesday, 06/17/03 - Dad

This week's big news is that Mo has completed the first 1/4 of his chemotherapy!

On 6/2 Mo started the 2nd cycle of 8 chemotherapy treatments. Each cycle is 6 weeks - 3 weeks with treatments followed by 3 weeks off. The first treatment of each cycle involves an overnight (inpatient) treatment and the second two are outpatient.

The treatment on 6/2 went a bit rougher than the inpatient treatment he received at the beginning of the first cycle. Mo developed a fever on 6/3, but it subsided after a nap and he went home in the late afternoon. We continued IV fluids through 6/4, but, due to the miracles of modern technology, the IV bag and pump fit into a small fanny pack and he was able to attend the staff talent show at school on 6/4. He also attended the 4th grade picnic on 6/5 and the class poetry reading on 6/6, which was the last day of the semester. On 6/9 and 6/16 Mo was given outpatient chemotherapy treatments.

The current health issues are centered around keeping things flowing in and out. On the output side of things, it required 2 cranialsacral treatments to get things moving during the first week of this cycle. Last week, the usual single treatment did the job. Today, the exercises that Heidi taught him did the trick, which was great.

Out for a 3 hour tour...

Despite low energy, we are managing to stay active. We celebrated the last day of school at the bowling alley with his friends Sam and Josh. We have enrolled Mabel in an agility course, where we are further developing her obedience and learning to train her to navigate various obstacles - jumps, tunnels, ramps, etc. This requires that we practice dog homework during the week. We have also been fishing, swimming (pools only), playing pool, Mo is taking golf lessons, there will be visits from relatives and friends, and there are lots of other items on the list, so there shouldn't be any dull moments this Summer. And lest his life become too cushy, his tutor Corinne began Summer tutoring today and will continue to visit a couple times per week to make sure his 3 R's stay sharp.
So now onward into 3 weeks off!

Mabel gets a lesson in Lego engineering

Input has been trickier. Mo's appetite has been very low during the last couple of weeks, causing him to be tired and fatigue easily. He has not been to Karate or drum lessons for a couple of weeks, nor has there been much practice of either of these activities at home. We restarted a medication to increase his appetite, and while we are waiting for it to take effect, we are sticking to low energy activities. After yesterday's chemo treatment we discovered that his blood counts were quite low, so we had to return to the hospital for a transfusion. For Mo, the worst part of this was having to have his port accessed twice in one afternoon. The hospital staff suggested that the transfusion might help with his appetite, and today he definitely ate more than he has for many days. However, the chemo made him pretty tired by mid-afternoon. He is planning to return to drum lessons tomorrow.

Practicing for his tryout for the lead role in Castaway.

I realize that these updates are rather sporadic, so if you would like to receive an email notification when the website is updated, please let me know and I will add you to an email list for that purpose.

Sunday, 5/25/03 - Dad

We are into our 3rd of 3 weeks off. School is winding down and we are making Summer plans. The fatigue Mo was experiencing when I wrote the previous entry has pretty much subsided. Interestingly, Mo suggested a change in his medication which not only resulted in better quality sleep, but also an improved appetite! He is once again attending school on a daily basis and appears to have gained a bit of weight over the past week or so.

The big news recently was the sale of Becky's berets "Keemo Kapps" at the WORT block party (5/18/03). If you have been following our story, when Mo lost his hair at the beginning of chemotherapy, his sister Becky found a pattern on the web for making fleece berets.

Everybody got into the act, including Mabel...
In addition to purchasing the berets for self or gifts, she offered the option of purchasing a beret and then she will donate it to the cancer ward at the University Hospital. Several people chose that gift.
Becky also sold some her pottery (she has been throwing pots for about 2 years now), donating those proceeds also. The afternoon was a smashing success, raising almost $150 and also receiving an invitation to speak to a class at UW-Whitewater in June, so she'll be going to college after all.

After making a few berets for Mo, Becky continued to produce berets, sewing about fifty and cutting out patterns for quite a few more. It has been her intention to find a way to sell them and donate the proceeds to an organization dedicated to childrens brain cancer. We have a fantastic listener-sponsored radio station in Madison (WORT), and the staff were gracious enough to let Becky debut her berets (which, with help from Aunt Cindy, she named "Keemo Kapps") at the annual block party.

... and Becky's friend Sisi.

Tuesday, 5/14/03 - Dad
		Just to locate us in chemo time, Mo is in the 4th week of the first of 8 six-week cycles of chemotherapy. Each cycle consists of 3 weeks of chemo on Mondays followed by 3 weeks off. At this writing we are in the first of the 3 weeks off.
Mo continues to be in good health and good spirits, with no major problems from any of the doses of chemo. However, some side effects are beginning to resurface with fatigue being the most prominent - increasing daily over the last week or so. He has needed to sleep late the last couple of days, which caused him to miss school. He is still being tutored for a couple of hours each day, and has had kept up with homework, so he is not falling behind. As there are only a couple of weeks of school remaining, and there are a number of end-of-semester activities planned, we don't expect falling behind to be an issue. Despite the increasing fatigue, Mo remains active. He is continuing karate and drums, and on the weekend we went bowling, swimming, and took a trip to Milwaukee to celebrate Mother's Day and Uncle Neil's birthday. Saturday was Mo's first bowling excursion since his surgery, and his first time bowling with his left hand. He had a good time and did a great job. When Mo was in kindergarten, he had a tendency to switch hands when writing, so we encouraged him to use his right hand. It appears he is ambidextrous, as his left hand has been ready, willing, and able to fill in as needed while we continue to work on rehabilitating his right hand. We expect that the chemo will slow down the rehabilitation process. His hair on the other hand, which had been growing fast and furious for the last several weeks, has proven a fair-weather-friend, once again jumping ship when the seas get rough. It probably won't be showing up again around here until next Spring.
We are not sure of the source of the fatigue. It could be a delayed response from the radiation treatments, the current chemo medicines, low blood counts, or some combination of these. He has also been a bit more restless at night, which is probably affecting the quality of his sleep and contributing to fatigue. Decreasing appetite may be yet another contributing factor. Everyone involved in cancer care learns to take things one day at a time and adjust plans as the situation dictates - we continue to make the most of each day.		Riding that train at Depot Days - 4/27/03

Saturday, 4/26/03 - Dad
	We had a great Spring vacation staying on Tybee Island Georgia - hanging out on the beach and visiting some of the historical sites in and around Savannah. What an interesting place! We came home rested and ready to begin the second phase of Mo's chemotherapy. At Fort Pulaski: Learning to use the big guns to fight cancer. We went into the hospital armed with a vacation, acupuncture, cranial-sacral therapy and the regime of medicines that we developed during the previous chemo course, and we were extremely pleased with how things turned out. For the 3-medicine treatment, that's one down and 7 to go!
This week's chemotherapy went extremely smoothly. Mo was in the hospital overnight on 4/21, where he received 3 chemo medicines. He receives a lot of fluid during this particular treatment - we want the medicines to do their job and then get out of his system. Aside from not eating too much on Tuesday, we had no other problems. He came home on Tuesday with some IV fluids. By Wednesday he had a school lesson with Corinne (his tutor) and attended the children's group at the hospital. By Thursday he was back in school and on the routine we had established in March and April. The week also included 3 karate classes.
We assembled some details about Mo's treatments; they are posted below the schedule on the treatment page.