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Friday, February 16, 2007 10:52 AM CST

Another long overdue update!

Thomas turned 4 this week on Feb 12th! He had a birthday party last Saturday with three little guy friends. The boys just ran around, laughing and playing with each other. They were so happy, and so was I! On Monday, his actual birthday, we had my mom over and Kristie (sister-in-law) and the three Red Bluff cousins - Madeline, Spencer and Eva. Thomas got a Rescue Heroes Mountain Action Command Center from Mama and Daddy. He and Mary Claire have been playing with it ever since.

In early December we went to UCSF for check-up scans and appointments. The scans were clean once again! We have now graduated to 6-month interval visits, so we don't go back again until June! We tried doing his scans without anesthesia, but he was not ready for that after all. He chose "to have the mask" instead. We may try again when he is five. Thomas has had his share of colds this winter, along with a bout of bronchitis. Other than that though, he has been healthy. He periodically complains of leg pain and that always makes the mother nervous. There hasn't been any consistency though to his aches and pains and he continues to be very active, so we carry on as usual.

On the behavior front, Thomas went through a very angry and defiant period this fall. I finally sought the help of a trusted children's therapist. She took Thomas through some play therapy sessions, where without any prompting, he acted out some of his hospital experiences. Play therapy is a way for young children to work through and resolve traumatic experiences in a way that makes sense for them (as opposed to "talking through it"). Things actually got worse with Thomas before they got better. We had some very angry, out of control behavior episodes around Christmas. Thomas seemed depressed to me (he even said repeatedly -- "I don't care"!). The therapist said that children often exhibit depression by being angry. By the middle of January, he started doing much better and is now back to his more happy and usually cooperative self. Perhaps he was only going through a "phase", but I like to think that the play therapy helped. I am sure it didn't hurt. It is so hard to imagine what our little guy holds inside himself after going through what he did. So many things done to him against his will and without his understanding.

On a lighter note, Thomas started learning to ski over Christmas vacation. We went to Tahoe Donner for four days, where he and Mary Claire took lessons. We're looking forward to starting swim lessons again soon at an indoor pool. Meanwhile, Thomas' days are busy with preschool two days a week, speech therapy on the other two days, and spending some time in the Mary Claire's kindergarten classroom with Mom on Fridays.

We will be traveling to Arizona and the Grand Canyon after Easter for a family spring trip. Sarah is starting to look into driver's training courses (she turns 15.5 in May), Rebecca will be graduating from 8th grade in June, and Mary Claire is preparing for her first dance recital in June(she'll be doing a ballet and a tap number!). I'm taking a watercolor art class for fun. Mike has started another repair project on the Porsche (this always make him happy) and is starting to do portrait photography on the side. Life is refreshingly normal, for which we are so grateful.

Thanks for checking in on us. Please sign the guestbook and let us know that you were here. I don't know if anyone checks this site anymore!

Tuesday, August 22, 2006 1:03 PM PDT

It's a big day for Thomas!!! He started preschool today for the first time! Two years ago on this date Thomas was at UCSF Children's Hospital recovering from a biopsy of his abdominal tumor and placement of his broviac catheter. On August 19, 2004 Thomas was diagnosed with Stage III Neuroblastoma. We are thrilled and so thankful to be sending him to preschool today. And guess what...he LOVED it!

Today is a first for Mike and me...we had all four children in school this morning! Sarah is a freshman in high school, Rebecca started 8th grade yesterday, and Mary Claire started kindergarten. Of course, they are at four different schools, which makes for a lot of scheduling. They all, though, are happy to be at school and are eager learners.

Thomas returned to UCSF two weeks ago for check-up scans. We are happy to report (an understatement) that there was "no evidence of disease". The photo on the home page was taken last month (July 2006). As you can see, Thomas is continuing to grow and thrive. He is off the charts in height for his age and at the 90th percentile in weight. He is at least a head taller than most of the other 3 year-olds in his class!

Although Thomas told me today that he wants to go to school every day, he is currently scheduled for Tuesday and Thursday mornings. We are making a new effort at having him wear his hearing aid. He was pretty resistant to it when he got it in the spring, so he wore it sporadically through the summer. Our current deal is that he wear it every day from breakfast until after lunch. He is attending speech therapy once a week. He loves his therapist, but does not like "working" on his speech. Thomas will be having an echocardiogram soon to check his heart. This is a routine screening since the chemotherapy he received can cause cardiac troubles. He should also have a pulmonary function test, but we are not sure if they can conduct an adequate test on someone his age. We are checking into this. I think I mentioned before that he has to repeat all of his immunizations. He'll get the last round of shots tomorrow and then he'll be caught up again.

Other update news...
Thomas is now a super swimmer. He swims across the pool and goes off the diving board by himself. We owe these athletic feats to Phoebe Natina, who taught him swimming twice a week through the winter and spring, and then again for a two-week session in June. I am totally thrilled that he is swimming at 3 1/2 years old!

The St. Joseph Vacation Bible School students held an Alex's Lemonade Stand in Thomas' honor in June. Thomas and I were interviewed by a local news anchor (thank you, Mike Mangas!) The fundraising event was also covered by local radio stations. The week-long effort raised $4,000 for pediatric cancer research. This is $1500 more than last year. Thanks to all of you who supported the stand. For more information, visit www.alexslemonade.org.

We vacationed for four days at Lake Almanor at the end of July. Thomas had fun riding a jet ski and tubing behind a patio boat.

We have a new play structure in our backyard, put together by Thomas' daddy. It has a lookout tower, swings, climbing wall, and a sand box. Of course, Thomas is very happy to have a proper digging place finally!

We have a garden for the first time. All of the kids are having fun watching the tomotoes, watermelons, squash, pumpkins and zinnias grow. It's wonderful to enjoy the simple, but amazing, things in life. So much less complicated than getting cancer treatment.

Thomas moved into his own "big boy" room at the beginning of August. He had been sharing a room with Mary Claire. He likes his room, but he's not so sure about sleeping alone in it. Meanwhile, Mary Claire is loving having her own, very pink, bedroom. She turned five last week and had a dress-up birthday party. Sarah and Rebecca are now sharing a room, and mostly liking it. It has a decidely more "teen" feel than the other kids' rooms!

The whole family is going to Camp Okizu over Labor Day Weekend for Family Camp. We are looking forward to this. Sarah and Rebecca attended the SIBS camp there in June and had a terrific time. For more information about this great organization for families with a child with cancer, check out their website at www.okizu.org.

All in all, we are doing well. Thomas is doing great. He often has more energy than his mother can handle. He talks constantly and is always in motion. He is polite and cute (by others' reports, as well as my own!), and such a love. We are so grateful for his continued good health. Please continue to keep him in your prayers. We return to UCSF again in three months for another check-up. And pray also for those families that are in the midst of neuroblastoma treatment, as well as for those families who are suffering the loss of their child to this devastating disease.

Sunday, June 11, 2006 10 PM PDT

A short note to let you all know that Thomas is indeed doing well. His scans/tests/exam in April came back A-OK. He got to see 'the red racing car movie', "Cars" today with the whole family. He is 120oy! A better update will eventually surface!
_______________________________________

Monday, March 20, 2006 9:37 PM PST

Again, it's been over a month since we've updated Thomas' page. The biggest news is that last week we learned that Thomas has some hearing loss in both ears as a result of the chemotherapy. We had thought he had avoided this side effect, but apparently the hearing loss can show up a year after treatment is finished. Thomas had his last audio logy check-up in April 2005. That round of testing showed a slight loss in the high frequency range in the right ear. Last week's testing shows high frequency loss in both ears, along with mild to moderate hearing loss in the mid-range frequencies in his right ear. So...he will be getting a hearing aid for his right ear. Sigh... On the one hand, this is so minor compared to all that he has been through; but on the other hand, it makes me sad that he will have another visual and permanent reminder of his journey.

Thomas is a very verbal child :). His speech is not atypical for a three year old, and it has continued to improve regularly so we did not suspect any hearing difficulties. He does have trouble saying the "s" sound and other initial consonants. It will be interesting to see how quickly his speech develops after he gets the hearing aid. We go next Thursday for another hearing test to confirm last week's results. He had a mold made of his ear last week, so he will be fitted for a hearing aid next week. The audiologist predicts that Thomas will have no problem wearing the thing. As she said, everyone has something hanging off their ear these days, so it's a cool look! Thomas will get a blue hearing aid with a neon blue and yellow ear mold. Pretty snazzy! They gave us a book to read to him called "Oliver Gets Hearing Aids" (Oliver is an elephant—he gets a boring gray hearing aid!). Needless to say, it's been featured reading material this past week.

Even with this latest development, we still have high hopes for Thomas' future as a musician. The kid has rhythm! I cried when they broke the news to us in August 2004 that Thomas would be treated on the high-risk protocol with very high doses of chemo that would likely cause hearing loss. I remember telling the doctors then that Thomas had had an ear for music since he was an infant and that hearing loss would be a particularly cruel loss for him. Now that it has happened, though, I choose to be optimistic that he will overcome this setback as he has so many others.

So tomorrow we are headed to the county public health department for immunizations. We will be going to UCSF after Easter, on April 18-19, for scans and a check-up. Thomas is doing so well and we are thankful every day for that.

Monday, February 13, 2006 10:10 AM PST

Happy Birthday to Thomas!

Thomas celebrated his 3 year old birthday yesterday, February 12th. After church in the morning, we had donuts for a treat. Then Thomas opened his presents from his family...a Tonka backhoe, a wooden workbench, and a numbers puzzle from Mary Claire. Daddy took Thomas and Mary Claire to the neighborhood park, along with the backhoe and a dump truck, for some digging and a picnic lunch. The real goal was to wear him out so he would take a nap before his gymanstics birthday party at 3pm. It worked! We celebrated in the afternoon with 2 hours of jumping and playing at a local gymnastics center with a dozen families (24 kids and 20 adults). Everybody had a great time. Thomas didn't stop moving for the whole two hours...such a big contrast to his birthday last year when he was laying in a hospital bed during his stem cell transplant stay, very sick and not moving at all. Yesterday was truly a milestone for him and us.

The picture is of Thomas during swim lessons he is taking with Mary Claire at an indoor hotel pool. He will be ready for summer! There is a picture from the party in the Photo Page..

We've had wonderful weather this past week with temperatures in the high 70s and 80s. The landscapers have finally been able to start working on the backyard. We can't wait to have the mud pit transformed into a fun play area. Thomas is anxious to do some digging in a new sandbox and Mary Claire wants to plant a garden. We took Sarah and Rebecca to see the Alvin Ailey II dance company here in Redding on Saturday night. It was a fantastic performance. Next, we are all going to visit Uncle John and Aunt Jean Gasman and cousins, Taylor, Emma and Patrick this weekend at their new cabin.

As for the clinical report, we got the results of Thomas' immunization blood work. It looks like he will need to repeat all of his immunizations (the ones he had from birth to 18 months). We'll be starting those at the local Public Health Department after he recovers from the cold he has had. He's also due for a hearing test. His next check up at UCSF should be in April before Easter.

Happy Valentine's Day to all of you! 000000000000000000000000000000000000000000000000000000

Thomas just typed in all of those "hugs" and said "I LOVE that!" So...don't forget to hug everyone that you love. We are so lucky to have each other!

Thursday, January 19, 2006 5:32 AM PST

GREAT NEWS! Thomas' scans were clear once again! He has now been NED (no evidence of disease) for one year. We are, once again, happy, relieved, and very thankful.

We had a terrific December. The whole family went to Disneyland in the middle of the month for 3 days. We had a "BLAST" (in the words of Rebecca). Thomas tell me every night as he's going to sleep that he wants to go back to "Dinnyland". Christmas was extra-special this year because we were at home and all together. Thomas loved the gifts that Santa brought -- an excavator (his term!) that he can sit on and operate, and a big, noisy Tonka fire truck.

We are now off and running in the new year. Thomas is in a gymnastics class with four-year olds and is holding his own. He and Mary Claire started another semester of Kindermusik yesterday. Thomas misses Mary Claire when she is in preschool (2 mornings a week). They are very good pals. They got an electric keyboard and guitar for Christmas, so we are regularly treated to their entertaining performances.

Mike and I are going to Maui next week, by ourselves! While it will be hard to leave the kids for six days, we are looking forward to some much needed time to relax and regroup. My mom has generously agreed to stay with the kids and Mike's parents will be helping out with some of the activity transportation during the week.

Next up on the calendar...Thomas' 3 year old birthday on February 12th! We are so looking forward to the celebration this year!

Tuesday, December 6, 2005 9:48 PM PST

Wow...it has been more than 2 months since we have updated this page! No news is good news. Thomas is doing terrific! I am thankful every day for his energy, his humor, his happiness, and even his two-year old tantrums. He has been busy with his Kindermusik class and gymnastics class. He loves tormenting Mary Claire and our new cat. He's into throwing anything and everything and is getting very good at batting practice. Mike and I are not sure where he got his athletic genes, but he clearly has talent!

He is old enough now to start "getting" Christmas. If you ask him what he wants Santa to bring, he will tell you "diggers, monster trucks, firetruck, mixer truck, more diggers!" (You get the idea about what is tops in his world!) We are looking forward to being together this year for Christmas, as last year we spent it in the hospital with Thomas after his surgery, while the girls were here at home with our parents.

Thomas was scheduled for his 3 month check-up the week before Christmas, but his scans have been put off until January because another child who is currently in treatment needed Thomas' MIBG (nuclear medicine) scan appointment. While I still worry about discovering a relapse, I mostly try to enjoy every day and not think about it too much.

My heart aches for the families that are in treatment now and for those that have lost a child to Neuroblastoma this year. I don't ever forget how blessed we are with Thomas' health and the minimal side effects he has suffered as a result of his treatment. With that in mind, I encourage all of you to consider donating to the "Lunch for Life" program during the month of December. It is a fundraising effort sponsored by the Children's Neuroblastoma Foundation, started by a father of a girl with neuroblastoma. CNF is currently sponsoring several research efforts to help find a cure for neuroblastoma. The way "Lunch for Life" works is that you donate the cost of one lunch (approximately $5) and ask five others to do the same. And then ask those five others to ask five more people and so on. You can donate at the Lunch for Life website . If you make a donation during December in Thomas' honor (Code 123) he will get an ornament added to his "virtual tree" . So...I invite you all to help decorate his tree in the hope of helping other children like him and preventing others in the future from suffering with neuroblastoma. Click here to see the Lunch for Life Page about Thomas

The new picture is of Thomas enjoying the new play equipment at Sacred Heart School in Red Bluff where his mom and aunts and uncles went to school. The equipment was recently installed and dedicated in memory of his grandpa, Vincent Flynn.

Sunday, October 2, 2005 9:19 AM PST

Thomas is finished with his treatment! He took his last dose of Accutane on Saturday, September 17th. We celebrated by adding a new family member...Cassie, our new kitten. All four kids are thrilled to have her here, and she seems to be surviving the family chaos.

We traveled to UCSF last week for follow-up scans, bone marrow biopsy and lab work. The results show that Thomas is still in remission...no evidence of disease! Thomas did very well with his pokes (injections and IVs) and anesthesia this time around. He tried to convince Mary Claire that she should get the pokes and the mask (for anesthesia induction), but she didn't want to go there! (Even though she recently told me that she wants to have cancer.) Dida (my mom) went with us this time. We all enjoyed visiting our friends on 7 Long at the hospital.

We will now go to UCSF every 3 months for follow-up scans, so our next trip will be the end of December. Thomas will have lab work done then to see which infant immunizations he needs to have repeated.

Meanwhile, we are a busy family. Thomas is talking a lot and has many directions for his mother during the day. He's a feisty, mischievious 2 year old, but a love also. He is doing "jumping" (gymnastics) classes and Kindermusik classes. I still get teary-eyed watching him run around the gym floor. We've come so far from last year at this time.

Mary Claire is attending Montessori preschool 5 mornings a week and taking a ballet class. Rebecca turned 12 on September 23rd and has been named "September Student of the Month" for the 7th grade class at her school. She is on the cross-country team and competing in her first English-riding equestrian show this weekend. Sarah is a busy 8th grader. She, too, has been competing in horse shows, taking 2 dance classes, and singing with a select choral group 2 nights a week. Mom and Dad are just trying to keep up with it all! We are doing some work on the interior of the house and putting in a new pool in the backyard. The latter has provided lots of excitement for Thomas especially. He has loved watching all the "diggers" and "mixers" come and go.

Last night we attended a spaghetti feed fundraiser for "Wings of Angels". This is a local organization started by the family of young girl who died of leukemia three years ago. You can learn more about the organization and Alyssa Araiza at Wings of Angels. They are currently providing support for 17 families in our area who have children with cancer or other life-threatening diseases. They give money for transportation, phone cards and other necessary items or services. Please keep these families in your prayers.

We think of all of you so often and the support that you have given us this past year. May God bless you and your families with health and good times together this fall.

Love, Theresa and Mike, Sarah, Rebecca, Mary Claire and Thomas

Saturday, July 30, 2005 2:17 PM PDT

GOOD NEWS...Thomas' had clean scans this week. No signs of recurrence of neuroblastoma. We are relieved and happy. Also, the blood tests show that his immune system is back to near normal, so he does not need the monthly immune globulin (IVIG)infusion and the antibiotic (Septra) that he has been taking every weekend for the past 11 months. The doctors also officially removed the isolation precautions. Wow...we are feeling so free!

Thomas now has to complete two more 2-week cycles of Accutane. He will finish those in mid-September. We go back to UCSF the last week in September for more scans. After that, he will get scans every 3 months for 1 year, then every six months for the next 4 years, and annually after that.

As most of you know, neuroblastoma is a very agressive cancer with a high rate of recurrence. I can't help but be anxious every time we go for scans. We continue to pray for Thomas' complete healing. And we celebrate every day of his good health.

More good news...Thomas is growing in weight and height. He's now almost 31 lbs and 36 1/2 inches tall. Just 4 months ago he weighed 25 lbs. He's now at about the 70th percentile for height and weight for his age. Not bad for a guy who has had 6 rounds of chemo, one bone marrow stem cell transplant and 11 days of radiation!

Thomas and I stayed with Joanne and Kevin while we were in San Francsico. Thomas had a great time playing with their 6-year old son, Anthony.

We're winding up the summer here. Sarah is competing in a horse show this weekend. Then both Sarah and Rebecca will be spending next week in Pismo Beach with their grandparents. Thomas and Mary Claire are busy swimming whenever they can. Mike's sisters and their families will be in town these next 3 weeks, so we will have lots of time with the cousins. Sarah, Rebecca and Mary Claire all start back to school on August 22nd. I'm looking forward to signing Thomas up for Kindermusik and maybe tumbling, now that he can be around kids again!

Thanks for checking in on us. Hope you all are having a great summer too. Sign the guestbook and let us know! (The picture at the top of the page was taken at La Jolla Beach in San Diego in early July.)

Theresa

Tuesday, July 12, 2005 4:18 PM PDT

It's been almost a month since I've updated this page. Thomas continues to do well. He has a little bit of cold, but other than that he is fine. He's now on his 4th cycle of Accutane. We are more than half way through with the 6 month treatment. It has been 5 months since his stem cell transplant in February. He received his monthly immune globulin IV at Mercy Hospital in Redding on July 1st. Perhaps that will be his last one if his immune system blood work looks good at the end of this month.

Thomas is scheduled for a CT scan and MIBG scan at UCSF on July 26th and 27th. It has been 3 months since his last scans. We will also meet with the Bone Marrow transplant team to evaluate his progress. I must admit that I am anxious about the tests. While Thomas' prognosis is good, Neuroblastoma has a high rate of recurrence. Please contine to pray for Thomas'healing.

The week of June 25th was the St. Joseph Vacation Bible School. Sarah and Rebecca were volunteer staff and Mary Claire attended for the first time. The children hosted an Alex's Lemonade Stand this year to raise funds for pediatric cancer research. You can find out more about Alex and her lemonade stand at Alexslemonade.com. Alexandra "Alex" Scott was diagnosed with neuroblastoma when she was 1 year old. When she was 4, she started an annual lemonade stand to raise money for her hospital to help them find a cure for cancer. She died last August 1, 2004 at the age of 8. As of the end of 2004, Alex's Lemonade stands around the country raised over $1.6 million for pediatric oncology programs across the country.

Back to St. Joseph School, the goal for their lemonade stand for the week was $1000; however, by the end of the week the kids had raised $2300! All four of our kids took part. They all made signs, waved signs, and sold lemonade. Sarah was interviewed by a columnist for our local paper. Thomas and Mike and I delivered flyers to staff at neighboring businesses. It was a rewarding experience for all of us. See the Pictures Page for photos.

Last week we all flew to San Diego for four days to visit the Skelly family. We took the kids to the Zoo, Sea World, and the Wild Animal Park. Thomas and Mary Claire were great travelers and interested tourists. We also just hung out with Carrie and Kevin and their four kids, making meals, playing cards, taking walks, etc. It was a milestone for us to be able to vacation together as a family after so much time apart this past year.

This week Sarah and Rebecca are at Camp Okizu, near Oroville, CA. Camp Okizu is a summer camp program run by the Okizu Foundation for children who have or have had cancer and their families. This week is sibling camp. It's a traditional summer camp in the foothills -- sleeping under the stars, eating in the lodge, playing games, swimming, ropes course, arts and crafts, etc. We're hoping the girls are having a great time, and get to meet other kids who have gone through a similar family experience.

Mike is hoping to visit his brother John this weekend in Clovis. John had surgery last month, but suffered a set back 2 weeks ago. He has been pretty sick, but appears to be improving slowly. Prayers of healing for John and good humor for his family.

I will probably update again after we go to UCSF in 2 weeks. Thanks for checking in and thinking of us.

love, Theresa, Mike, Thomas and girls

Wednesday, June 15, 2005 736 AM PDT

Thomas has been a busy guy lately! Yesterday he visited Dixie Elementary School in San Rafael, CA, where his Aunt Patty is the principal. Thomas, Mary Claire and I drove down to Aunt Patty's on Monday and spent the night. Then we spent the morning at Dixie. We saw a puppet show in the gym, put on by local librarians promoting the summer reading program. Then Thomas and Mary Claire played on the playground with the kindergartners during their recess. Thomas loved the slide. Next we visited Mimi Reddick's 1st grade class to thank them for the quilt that they made for Thomas (with their 4th grade pals) and the cards that they sent him. We also met Mimi's 15 year old son, John, who was treated for cancer at UCSF when he was little and also underwent a bone marrow transplant. We were excited to see 1st grader Patrick Hunter, who visited Thomas in the hospital several times and brought him trains, books, and other toys from his own collection. We then joined the teachers in their staff room during recess and ate cookies. It was wonderful to meet so many people who were so supportive during Thomas' hospital treatment. I found myself near tears several times. The staff had sent cards and gifts on several occasions. Then we were off to the 2nd graders pool party, where Mary Claire and Thomas ate snacks and played with clay and crayons. Thomas and Mary Claire got a bonus treat when they got to sit in the fire truck at the station next to the pool! Then it was on to the 5th grade pool party. Thomas and Mary Claire played in the water on the steps and got soaked. We arrived back at our car in time to see the big (probably 4-5 feet tall) dragon puppet being put in the librarian's car. We changed clothes in the parking lot and headed out after giving good-bye hugs and kisses to Aunt Patty. Thomas was asleep by the time we got to the freeway! It was a very fun morning for the kids and very special for the mother. What incredible care and support we experienced from the crew at Dixie, a testament to their giving spirits and their concern for my sister and her family. This is one of the many gifts we have received as a result of Thomas' illness.

As if the morning didn't include enough fun, we stopped at Dida's (my mom) farm office on the way home. Thomas got to climb on several tractors and he and Mary Claire ate popsicles while visiting with Dida, Uncle Brendon and Uncle Dan and some of the other staff. He LOVES all the equipment and can't get enough of it. We made it to Redding by 6pm and met Daddy at the hospital for dinner. Whew, what a day!

Other news... Thomas and Mary Claire are taking swimming lessons last week and this week at a neighbor's pool. Thomas is loving it. He is now putting his head under water as the teacher swims him across the pool. Check out the photos of him in his SPF suit and hat. Mary Claire is starting to swim on her own, jumping into the pool and swimming to the side. She's doing great!

Thomas got his monthly IVIG infusion at Mercy hospital here in Redding week before last. He was very cooperative about getting his IV placed, and of course charmed the nurses with his mischievious personality. He is now into his 3rd round of Accutane. So far his skin is doing pretty well. He has a few dry patches and some redness, but no cracking or rashes like last time (although that could change by next week). We go to UCSF the week of July 11th for scans and blood tests.

Big sisters Sarah and Rebecca are in Texas for nine days, visiting their grandparents and aunt, uncle and cousins. Mike and I had a wonderful get-away last week after we took them to the airport in Sacramento. We stayed overnight at a bed and breakfast, while my mom stayed with Mary Claire and Thomas. It was a birthday treat for me.

Well, the little mister is sneaking down the stairs now so I better wrap it up. Thanks for continuing to check in on us. It means a lot!

Please pray for Uncle John (Mike's brother) who is having surgery today in Redwood City, CA. 2 Pm - Surgery done - He did well!

love, Theresa

Wednesday, May 25, 2005 3:04 PM PDT

Yes – it has been almost a month! Thomas is doing well and will finish his second round of Accutane Friday. This time he has had more of a rash reaction and we took him to our friend the pediatric dermatologist who advised we use more creams to moisturize – Mary Claire and I picked up a Costco size of Cetaphil cream and he doesn’t mind getting a rubdown after his bath. We also now know that his Accutane dose is as high as a football player’s for acne.

The Thomas Gasman Song is getting lots of play in our house and others as well. Give it a listen!

Last night we had a lucky event. The fireman down the street came by to say goodnight to his daughter in his “company car”. Eight neighborhood kids were soon allowed to run the lights, sirens, wear helmets, talk on headsets, buckle into the seats and hold the steering wheel. Thomas, Mary Claire and Rebecca were having a blast way past bath time.

Another fun time was venturing out into the rain storm a week ago to search for the Redding Rodeo loot using the clues in the newspaper. All twelve Gasman Eyes were on target but about an hour too late to find it under the cedar tree. On Saturday we watched the Rodeo Parade which had plenty of horses, fire trucks and marching bands to keep Thomas and Mary Claire riveted.

Thomas will return to UCSF for another 3 day round of scans and tests in Mid July – we are working at arranging his monthly treatment with immune globulins here in Redding for his June dose. The entire summer is packed with trips for the girls with their grandparents, camps, a family trip, vacation bible school for Mary Claire, horse camp and more. I am trying to get our pool redone since it is now a dirty vinyl hole in the ground and the heat has finally arrived. Phase II of landscaping is being drafted for the backyard.

Our family is planning to join our neighbors doing a garage sale this Saturday. Come by and see what we got! I am working that day so it might get exciting.

There are some new pictures to search for - see the links page.

Thursday, April 28, 2005 11:20 PM

The short story: Thomas is doing great! He finishes his first 2-week cycle of Accutane tomorrow. He's been a champ about taking the six pills a day (3 in the morning and 3 at night). His face has been red, dry and scaly. His scalp is covered with dry patches and his lips are cracked, peeling and sometimes bleeding. All of this doesn't seem to bother him though. He's running around (literally) like any other active 2-year old, tormenting his older sister when he can and getting into trouble with her with glee. He laughs easily, sings regularly, and is saying more and more words every day, even putting them together in phrases now. He's sleeping well at night and eating well during the day. He's gained weight, 2-3 lbs. Every day I am so thankful for his good health and his wonderful progress.

I got an early Mothers' Day present last week...a spiffy double-jogging stroller. It represents my pledge to myself to get out and smell the roses with my kids (or the wildflowers or pollen, as the case may be). We have gone on several fun walks (which in my case is what it is for, even though it IS a JOGGING stroller!). We've gone to the neighborhood park, on the nearby trail through the canyon in back of our house, and on a trail at an open space preserve across town. The new home page photo was taken last Sunday when the whole family was out on an "adventure".

Two days ago, Mary Claire and Thomas were sitting on the front lawn, eating lemonade popsicles and enjoying the spring sunshine. It was a sight to behold...enough to bring tears to a mother's eyes. Our experience these past 9 months sure does help us to stop and appreciate the little things in life. I thank God for these special moments.

One of the nurses from the UCSF Oncology Clinic called today to say that Thomas is due for his IVIG injection. This is to boost his immune system while it is still recovering from the stem cell transplant. We have our first appontment with the local oncologist tomorrow afternoon, so we will see if we can get the injection here in Redding. If not, we will need to go down to San Francisco next week. Thomas has a follow-up appointment at UCSF the following week on May 11th. At that appointment, they will check his T-cell counts to see if they are coming back. He'll also have blood work done to monitor any side effects from the Accutane. Thomas had a hearing check last week and the good news is his hearing is unchanged since before his stem cell transplant. This is great to know because he was at risk for hearing loss due to the high doses of particular chemo drugs he received just prior to the transplant. He does have some minor hearing loss in his right ear...detectable, but not significant.

As for the rest of the family, everyone seems to be doing pretty well. Mary Claire has had some difficulties with the transition back to our "normal" home life. She's had some nightmares about being separated from me and Thomas, clingy and whiny behavior, and generally out-of-sorts. She's sleeping better now though and has had no bad dreams this past week. She has been able to attend preschool 3 days this week, and that seems to make her happy. Rebecca competed in her second track meet today. She tied for third in the 200 meter race. Sarah's middle school choir will be recording a CD next week. Both Sarah and Rebecca are going to a dance at Sarah's school tomorrow night. Yes, it's a house full of toddlers AND teens! Mike is keeping busy with work, but has a little more time now that he is not doing his own billing. I'm trying to get to the gym a couple times a week to recover my body from the stress of the past months. It's nice to be able to reconnect with our neighbors, friends and community after being gone off and on for so long.

I ask that you keep the family of Alexia (Lexy) Flory in your prayers. Lexy died yesterday morning after a 3 1/2 year battle with Neuroblastoma. She was five years old. She and her family are from Texas, but they have been living in San Francisco this past year where she was receiving treatment at UCSF for the recurrence of the neuroblastoma. She is survived by her mother and father, 4-months old brother, grandparents and great-grandparents, and many aunts and uncles and cousins. Lexy was a beautiful little girl with a courageous spirit and an infectious smile. Our hearts are heavy for her family's loss. We are reminded how precious all of our children are and how fragile life can be. Please give hugs, smiles and laughter this coming week in memory of Lexy.

Mike adds - A fun development over the last week is the arrival of a song written specifically for Thomas via the Songs of Love organization . We all love it and Thomas can't stop dancing and shaking to the upbeat tune. If you can play MP3 files - here is a link to the Thomas Gasman Song . You can also link from the Main Thomas Links Page.

Monday, April 18, 2005 12:30 PM PDT

Once again Thomas has amazed us. He has made it through his first two days of Accutane without a problem. He GOBBLES them down like jelly beans. Some information on Accutane reports that popping the pills could irritate his esophagus but that fear is probably based on the older, powdered formulation. The pea-sized capsules have an oily liquid inside and he likes to wash them down with syringefulls of water. He has spit out fewer of the three capsule skins each of the four times he has taken them. He might even be swallowing them without popping them. I don’t think light degradation is a big factor the way it is working, but having him swallow them whole would minimize that concern as well as reduce any irritation.

Now we get to see if the Accutane makes him irritable. He will need to maximally protect his tender skin from the sun and start using moisturizers. It’s been great to have him home for so long. His appetite is good when he finds something he likes and I expect his weight to increase soon.

Hair Report - See the HAIR Pictures! His eyelashes look normal – almost half an inch. He’s growing thick hair, darker than his previous blond.

Monday, April 11, 2005 2 PM PDT

Thomas has spent the last five nights in his own bed! – he likes it. He has spent his days playing hard, eating well and visiting neighbors. There are no "plans" for hospitalizations in the future. He will return to UCSF in mid-May for a follow-up appointment. Theresa is thinking about unpacking her suitcase for the first time in 8 months.

This Saturday, the 16th, he will start the Accutane. I’ll see if I can find a way for him to try taking other pills so I can come up with alternatives if he doesn’t cooperate. Using his favorite food(s) to hide the pills becomes a problem because a bad experience might make him unwilling to try bananas, applesauce, or scrambled eggs again.

Theresa and I have decided not to embark on an additional study protocol using neuroblastoma antibodies. We did a lot of reading, meeting, contacting experts, discussing between us and praying. The looming reason to do the study would be to avoid asking ourselves why we did not participate if Thomas does reoccur. But that was weighed against his good response so far and his propensity to run into complications.

Today was Garbage Day – another opportunity to test his hearing as the trucks head into our street. He seems to have no loss and it may not be easy to get much more objective data than that when we do have the audiology appointment.

Hair Report - His hair is getting longer and does seem like it is coming in darker.

Wednesday, April 6, 2005 5:30 PM PDT

Thomas and Theresa are now driving to Redding after an overnight trip to UCSF. He finished his last radiation treatment Tuesday and had another MIBG scan under anesthesia this morning. He has done well with the radiation treatments – especially in regards to cooperating with being wrapped up for the four minutes it takes to do the treatment. We credit the radiation treatment crew for making this an experience that he can be proud of. Thomas has his mattress on a new bedframe with headboard - a bigger "Big Boy" bed.!

The CT scan, MIBG, bone marrow and other tests over the last week have all shown no apparent remaining tumor. There is some scaring in the area where the tumor was removed, but this has stayed the same and doesn’t “light up” on the MIBG scan.

Mary Claire and Thomas seem to be swapping runny noses and coughs – hopefully Thomas won’t find himself too sick to stay home. Last night he had a fever that didn’t rise above the “go directly to the ER” threshold.

We have the Accutane to give him. The pills are pea sized and he needs to take three twice a day for two weeks, have two weeks off and repeat for six months. Another hurdle – getting him to take the pills, or finding a way to safely and effectively get it into him. The packaging for the first course amounts to a shoebox size – I imagine a lot of the cost goes to support regulating this medicine that causes birth defects in pregnant women’s children.

Sunday, April 3, 2005 10 PM PDT

Thomas is home for the weekend - doing fine with lots of energy. He has even spent every nap and night in his “big boy” bed - although it takes a parent to fall asleep with him.

He continues to take the oral Cipro antibiotic for his blood and line infection – he will finish that Thursday. The next phase of treatment is for Thomas to take cis-retinoic acid or Accutane. Ideally he will be able to amaze us and take the capsules; three, two times a day. If the Accutane is removed from the capsules light can destroy it and we don’t want that. Others have put it in peanut butter or ice cream. After we get him to take it we get to see how he does with the side effects. It makes your skin and mucous membranes dry and rough. He will take the Accutane for two weeks and then off for two weeks for six months.

All his tests over the last week have gone fine. Friday he had to have another IV started to get all the blood samples for his kidney function study, but settled down quickly afterwards. The MIBG scan this week requires an injection of an isotope that comes from Canada so it is only available for a Tuesday injection and a Wednesday scan. The radiation oncology crew was willing to wait until Tuesday afternoon to do Thomas’ final (12th) treatment, so Theresa and Thomas will travel down on Tuesday and return after the scan on Wednesday. Somewhere we will fit in a hearing test in Redding.

Hair Report - HAIR Pictures!
More fuzzy – new pictures NOW!- usually it looks blond but tonight after his bath it looked darker – but maybe that was the bath dyes and dark shampoo, bath gel and bubble bath we mixed up.

Wednesday, March 30, 2005 9 PM PST

We had some bonus activity today - and more to come. Today Thomas got to show a fellow Cancer Kid from the Family House what radiation treatment is like -- and he did better than ever.

After that we went to clinic and informed Dr Godsby that today is Doctor's Day! He informed us that we were behind on tests. Sooooo.... today Thomas had a heart ECHO - he did well but ended up missing his normal nap. Tomorrow he will have a Bone Marrow biopsy at 1 PM which will require no B-fast or Lunch because of general anesthesia. Because of the fun planned for tomorrow I delayed my departure until Thursday.

Friday, Thomas will have a kidney function study which requires many blood draws over the day. We also get to arrange a MIBG and audiometry - maybe next week. More time in SF.

Mary Claire and Thomas enjoyed their reunion and were rather, ummmm "active" in the Family House. Thomas got his fingers pinched in the door, we'll see how thay look in the morning. I may need to bring Mary Claire with me when I leave to make it work down here. I have missed two "second calls" this week which were covered by my hardy colleagues - I return to take 1st call Friday and Sunday. It's time I did some work!

Theresa and I could use prayers as we discern whether Thomas should be randomized for another type of treatment. Thomas is having more diaper rash problems - the radiation and recent antibiotics have effected the situation.

Hair Report - Fuzzy, Fuzzy - fun to feel, even he does it. Pictures soon.

Tuesday, March 29, 2005 1:30 PM PST

Thomas, Daddy and Rebecca are in San Fransico, staying at the Family House. Thomas has two more radiation treatments checked off. Eight down, four to go.

He enjoyed showing Rebecca and his Beanie Baby dog how the treatment works. I have found that if I set him down when we enter the building after the bus ride he does best because he is in control. He walks to the elevator, pushes the button, motions for his patient card and scans it at the desk and hangs out in the hall or at the waiting room fish tank until Pat the technician and/or Dr Wara the Radiation Oncologist arrive. Then he walks like a jock back to the treatment room.

I was a little slow helping him up on the treatment table yesterday and he was trying to climb up. He pushes the button to raise the table. Today he was thrown off a bit by some prematurely unwrapped candy but was soon back on track, putting on his velcro coat and getting the Sharpie marks on his skin lined up with the laser lines which mark the axis of treatment. Then the treatment head rotates under him revealing the ceiling of fiberoptic stars, the marks are checked one last time and we head out through two heavy doors and watch him on the monitor and talk to him on the intercom. A 15 sec (or less) buzz from the back and the treatment head rotates around above Thomas. This is when he moves the most - watching the head appear again to his right. Another short buzz from the front and we head in to unwrap and congratulate him. Today he got some Play Doh for a prize. He marches out of the treatment area, scans his card again and back to the elevators and onto the shuttle bus back to the Parnassus campus. We skipped the visit in the gift shop today and made the 9:15 bus back. Tomorrow we have a 9:30 appointment with Dr Goldsby.

We took a stroller ride to get some groceries and then through the Golden Gate arboretum before heading back to have lunch. Thomas is now napping. Tomorrow Theresa and Mary Claire will come down and I will head to Redding.

Hair report - Thomas is getting fuzzy. He is sprouting eyebrows and his eyelashes are over 1/4 inch long.

Easter Sunday, March 27, 2005 7 AM PST

A series of events led to a miracle for our family for Easter.

As you were last informed Thomas was doing better, Broviac removed, blood infection/sepsis/shock controlled, transferred out of the Peds ICU. He had us chasing him around with his IV pump & pole. The klebsiella was tested against ciprofloxacin and was shown to be sensitive. He got his first dose Friday night.

Saturday morning, when it was time to give him his second dose of Cipro, his right hand IV was infiltrated and had to be removed. Now Thomas was a really free man and got to run around untethered while the doctors decided what to do. The sisters and mother went to Joanne & Kevin’s to dye Easter eggs and decorate cookies. Meanwhile……

The Infectious Disease doctor was officially consulted and felt oral Cipro would be fine and that Thomas could safely go home. Mike & Thomas packed up the room, harassed the team for discharge orders and moved to the Family House where Thomas napped while Daddy packed there. The Girls arrived and we loaded the cars and headed home, arriving at 8:45 PM - too late to see Mimi on her birthday – but early enough to get ready for the Easter bunny to arrive.

What’s the miracle? – every moment of every day. But especially - Thomas and Mary Claire slept in their own room (they swapped beds) all night !

Friday, March 25, 2005 9 PM PST

Thomas is doing fine. Removing the Broviac line was the right thing to do. He will need to get poked for blood draws but there will be less concern with infections. The organism (klebsiella) was sensitive to ciprofoxacin and he is getting his first dose of that right now.

We received the news that his test for viruses came back negative. This means the RSV (Respiratory syncytial Virus) that he had last week is gone. His lungs can start recovering and he no longer needs to be isolated from other people for Their protection. So... Thomas spent much of the day walking the halls, entertaining everyone. His favorite video right now is "Elmo visits the Firehouse" and today SFFD Chief Joanne Hayes-White visited the kids. He was pleased, to say the least. Young Patrick brought his family from Marin to visit and a riotous puppet show ensued.

Monday is the first day that a Peripherally Inserted Central Catheter (PICC line) can be arranged after he has 48 hours of treatment. He will need to continue antibiotics for a while. Hopefully everything can happen in time to get him to a radiation treatment on Monday.

Sunday Mike will need to leave Theresa and kids to work on Monday, so they will be at the Family House during the week for daily radiation - hopefully with some adult support. I will get new pictures set up when I return to Redding.

It's time to get everyone to bed.

Thursday, March 24, 2005 11:30 AM PST

Thomas' fever spiked to 104.4 around 8pm last night in the Peds ICU. At 8:30pm they put in a peripheral IV in his right hand. Now all of his medications and fluids are going through there. They took out his tubies (Broviac catheter) at 10pm. They gave him some light sedation (fentanyl) prior to the procedure. (It was done in his bed in the PICU). The surgical resident gave it a quick tug and it was out, although it wasn't exactly comfortable for Thomas...but it was over quickly. He then slept pretty well until 4am and then was up for a couple of hours. His fever is gone and his heart rate and respiration rate are approaching normal. His blood pressure is still a bit concerning as it is periodically reading low. They are allowing him to eat and drink again, so that makes him happier. He'll probably be in the PICU for the rest of the day and maybe over night again, and then back to the 7th floor. He will need antibiotics for 2 weeks. We will find out later today what the specific bug is and that will help target the antibiotics. They will put in a PICC line in his arm so that he can get the meds on an outpatient basis. Don't know yet how long he will be in the hospital, but possibly until Monday.

We're relieved that he is doing better today. Thank you for checking in on us and offering your prayers. Mary Claire and Rebecca and I are now off to see the Easter Bunny at the 10th Ave. Family House, while Sarah and Daddy keep Thomas entertained. More news later... Mary Claire just chose the fish border for his page. We hope you like it. We know Thomas likes fish!

2:30 PM
Thomas was transferred to the regular ward Rm 725 and is doing better. He spent a lot of time this afternoon digging dirt with mini M&M's from one of his Easter Baskets. Thomas always seems to be in the hospital to take advantage of holiday celebrations.

The blood cultures grew out klebsiella - gut bacteria.

Wednesday, March 23, 2005 7:47 AM PST -> 6 PM PST

See Multiple entries for today
Mike took Thomas to the hospital (UCSF) at 4:30am this morning. He is running a fever and vomiting. They've started him on antibiotics. I am leaving to go down there with Sarah, Rebecca and Mary Claire.

Please pray that Thomas will fight this like he has his other complications and that he will be better very soon. The Lord has kept him safe so far and we continue to trust in His healing powers.

Wednesday 10AM PST
Mike writes: Thomas is doing better, and sleeping comfortably at the moment. I woke up at 4 AM to him breathing rapidly and irregularly, he didn't feel warm but the first temperature I took was 101.9F.
He was having shaking chills. I called the oncologists and started gathering his and my stuff to bring across the street. When I woke him, he was obviously uncomfortable. All the beds on the peds cancer floor were full so we went to the treatment room, turns out we are supposed to go to the ER. Thomas could remember the treatment room negatively for having IV's placed and femoral lines removed, but he has frequently visited it to see the oragami fish mobile on his walks around he ward. Soon after he got there he threw up last night's dinner. He wanted apple juice badly and drank two 4 oz cartons, each of which came back up in turn.

He fell asleep and I went to do the admissions process and change my clothes and put his Nissie in the wash. By then they a had a room for him and he has been sleeping, getting a chest X-ray (not as fun as his treatments), exams etc. He ate a whole banana and some cereal at 9:20. It's looking like this might be a stomach flu and may blow over quickly. If he continues to do better and his blood cultures are negative he may be able to leave by Friday morning and only miss two radiation treatments.

On a more positive note: As of yesterday at bedtime Thomas had a good appetite and lots of energy. He has been very good at cooperating with the treatments - holding his Herseys kiss while strapped down. The rain has kept us indoors although we did get wet for a jogging stroller ride around the Children's Playground in Golden Gate Park. Yesterday we enjoyed a tour of the Anchor Brewery and Thomas licked foam from each of my sample glasses. He is starting to sprout hair from his noggin and I noticed that his eyelashes are uniformly 3/16 (maybe 5/32) inch long. Hopefully we will be able to move along with the radiation treatment soon. Watch for further updates.

Noon
The blood smear has bacteria in it. It could be a contaminant but it could be a blood or Broviac infection (It had been over 24 hours since I had last flushed the line - so it doesn't entirely fit.) They will add vancomycin and tobramycin to his Zosyn until the blood cultures are back.

3 PM
All the "girls" arrived about 2 PM. Thomas' energy has waxed and waned. He didn't want any food for lunch but drank some root beer. His temp has gone up as far as 103.2 F. His blood cultures have already grown out a gram negative rod - so it looks like he will be on antibiotics for at least a week to ten days. The infection probably came from his Broviac catheter or from his intestinal bugs. His heart is running from 130-190/min and we just put him on a telemetry heart monitor. The oncology team gave the Peds ICU team a heads up "just in case" - Thomas' reputation for getting into trouble proceeds him. Radiation will be on hold until next week.

5 PM
We have confered with the oncology attending, Dr. Goldsby and the PICU team and decided to watch Thomas overnight in the Peds ICU. He continues to have shaking chills and some low blood pressures. Please keep Thomas in your prayers. We won't be able to update you as ofter over the next day. His Broviac may need to be removed, but it is needed less these days and would not need to be replaced.

Saturday, March 19, 2005 7:30 AM PST

Thomas is home again for the weekend. He's doing great! He's literally running around, almost non-stop. This time last week he was having to hold onto things to walk and was sometimes crawling to get places. It's an amazing turnaround. We still do not know what was causing his limping, but we thank you for all of your prayers. My heart feels much better now that he is better again.

He's doing well with his radiation treatments. He doesn't like to be strapped onto the table. Who can blame him? The treatments only take a few minutes. (I'll have Mike time them exactly next week.) Yesterday we arrived at 9am for his appointment and were walking out of the building by 9:15am. We are able to see him on a monitor during the treatment and talk to him on an intercom system. Yesterday he held onto the chocolate kiss (his treat for lying still) through the treatment and had his new little stuffed bunny next to his head (so bunny could "see how the pictures were taken"). We took the shuttle bus back to the Parnassus campus, got cofee and cookies for a birthday party that Mary Claire had planned, and stopped by to see Kevin DeLucchi for a few minutes.

I took Thomas into the clinic on Wednesday because he had had chest congestion and raspy breathing and seemed short of breath at times. They did a nasal swab test and found that he has RSV. There was talk of admitting him to the hospital for 7 days of isolation and a treatment to prevent it from getting worse. It was decided, though, that we would monitor him and if he got worse we would decide what to do then. It's likely that Mary Claire and I had RSV and he caught it from us. In immunocompromised people like Thomas, it can get very bad very fast. We are lucky that Thomas is holding his own. No fevers and his energy is fantastic. He was given an albuterol inhaler and we are using that when he is sleeping to help his breathing. We will pray that he continues to do well. They also decided to forge ahead with the radiation treatment. I guess they would consider stopping it because the treatment will likely lower his white count, making it harder for him to fight infections. We are glad that we can continue to move forward right now.

Carrie did a fantastic job of keeping the kids entertained with things she brought, like books, light-up pens, and watercolor pencils. We took them for walks and had to stop to look at all the trucks and diggers we saw on the street, as well as the "guys" (any one in a hard hat or safety vest, according to Thomas). Mary Claire and Carrie went on "an adventure" to visit her former law firm co-workers down at Embarcadero Center. They took the train. Mary Claire charmed one of the flower vendors, who gave her a yellow rose. Carrie has a special gift for connecting with kids, and I am so lucky to benefit from it!

It's great to be together again for a couple of days. Rebecca is supposed to be doing a jog-a-thon today to raise money for her track team, but it is pouring rain. We'll see if it happens! Mike and Thomas will go back to UCSF tomorrow for the next week of treatment. Thomas has an appointment in the clinic at 10am on Monday with Dr. Goldsby. We will get the results of blood work done last week and see how his body is responding to the radiation. Other than loose stools though, it appears he is doing well (I know...TMI...too much information!).

Thanks for your continued support and prayers. Also please pray for little Alexia (Lexy) Flory and her family this Easter week. She is a beautiful five year old girl who is fighting very hard right now. She has Stage IV Neuroblastoma and is being treated at UCSF for a relapse. This disease can be so devastating. My heart aches for her and her family. I am so grateful for Thomas' wellness right now.

www.caringbridge.org/tx/alexiaflory

More updates to come...

Monday, March 14, 2005 7:10 AM PST

We're off to San Francisco in an hour. Thomas will have his radiation simulation session this afternoon. He's been practicing lying still (we say "freeze!)while lying down. We'll see how he does! Please pray he can go through this without anesthesia. Tomorrow morning he will have an MRI of his brain and a CT scan of the abdomen and pelvis. Then he'll start the actual radiation treatments... 1 each day for 12 days. Weekends off, he'll come home.

Thomas is still limping, but seems to be a little better. We may get some ideas about what is causing that this week, or we may not. We'll see.

Mike and I, Thomas and Mary Claire are going down today. Mike will come back Tuesday night. Carrie Skelly is coming to stay with me and the kids for the rest of the week. Big thanks to the Skelly family for letting us have Carrie again. Carrie is great fun for the kids and a big support for me. I am so happy that Mary Claire can come with us this time. It's been hard to be apart so much.

Sarah and Rebecca are being real troopers, as they have to pack up too when we leave. Needeless to say, it's getting old. They will be with Mimi and Papa Dave, and with friends - the Knaks and Griffeys - this week.

Gotta get on the road. Thanks for your prayers and thoughts as we start this next phase of Thomas' treatment.

Later that day 9:30 PM
We arrived in time for Thomas to show Mary Claire the glass elevator in the parking garage, the elevator into the basement, the reception desk where his UPC code card is scanned, the fish tank and then into the simulation room. He squimed and even cried some when we velcroed him down and left the room but mostly he was anxious for us to congratulate him on how well he did. Within fifteen minutes they were pleased with the films and he had blue Sharpie crosshairs drawn on his belly front and sides where the laser lines intersect.

Turns out his therapy won't start tomorrow/Tuesday. It's a good thing I videotaped our visit last week so Theresa knows what we were told. Tuesday afternoon he will have a film done in the treatment setup to check everything out. Then we will see if they can fit us in during the rest of the week. Apparently they are very busy.

After that we enjoyed some playground time in the Golden Gate Park Panhandle and settled into the Family House. Mike took the train to Safeway for groceries and after dinner we stroller-raced down Irving for Ice Cream. Mary Claire and Thomas are enjoying hanging out, playing with the toys, and visiting other families. The others are asleep and I'm updating you....

Thomas is indeed walking better. The only logical explaination I have is that all your prayers for him are being answered! We will keep you posted.

Wednesday
Tuesday Thomas had his scans under anesthesia. Early results are that his head, chest, abdomen and pelvis are okay. Some sinus thickening was mentioned which goes along with Mr. Faucet nose. He woke up wanting to eat the Cheetos we brought for a picnic.
We got on the Shuttle to head to the Mt. Zion Campus for the setup-check x-ray. Thomas and Mary Claire really like the bus ride. Thomas was a little bothered by the lingering anesthesia still but held fairly still and they were able to get the film and then proceeded to start treatment. He was doing lots of "Yeah", "Uh-huh" etc. as we unwrapped him - which means he is really proud. He will be able to get four treaments in tis week -so if all goes well he will be finished on Wednesday, March 30th.

Thomas is on the schedule at 9 AM M-F. Today he did even better - likely showing off for Aunt Carrie.

Thursday, March 10, 2005 10 PM PST

Thomas and family are again back home after a two-day visit to UCSF for appointments.

Thomas has remained happy and energetic. We are looking into a new problem that started over the weekend. Thomas is having trouble walking. Several physicians evaluated him this week and there are no obvious explanations. The likely cause is the chemotherapy's effect on the nerves to his feet and legs making his sensation different. His gait is unsteady and hesitant. Please join us in praying that this problem doesn't get worse and starts improving.

Mike drove Thomas down to UCSF on Monday and met with the radiation oncologist on Tuesday morning. Thomas will begin the radiation with planning on Monday the 14th and hopefully have four treatments before coming home for the weekend. Mike and then Theresa will bring him back the following two weeks. The treating doctor is confident that Thomas can complete the process without needing general anesthesia each day, using playful techniques, bribes and restraints if needed. We have started practicing having him lay flat for "pictures". We will highlight the Gee-Wiz aspects like the fiberoptics, laser lines, stickers on the machine and closet full of toys which seemed to appeal to him during his tour. I'm thinking that the long planning session will give us opportunity to rehearse the daily process – I will give more detail, if it works!

Theresa came down on Tuesday and I went home. They met with the BMT team on Wednesday. His lab values all looked good. Much of the focus was on his walking difficulty.

Wednesday Dida brought Mary Claire to her pediatrician and started treatment for an ear infection. Hopefully MCJ will soon feel better after a week of fevers, cough and fatigue.

Please keep Thomas in your prayers for his walking and cooperating with the radiation sessions.

Saturday, March 5, 2005 2:24 PM PST

Day 24

Home again, home again! We are all happy to be together under the same roof again. Our first night home was a bit of a circus. Mary Claire and Thomas each wanted Mama to sleep with them, so I ended up traveling between two rooms all night as each one woke up periodically crying. All part of the transition... Sleeping is better now, but Mary Claire has come down with a bad cold -- fever, cough, runny nose. We are doing a lot of handwashing to limit transfer of germs. We're hoping Thomas can avoid this bug. Meanwhile, Mary Claire is enjoying the special attention that goes with being the sick child!

Mike got to see Rebecca ride today. Thomas loves going out to the horseback riding lessons and seeing the horses, cats and dogs there, but we'll have to avoid that for the next few months. Sarah is off at a Girl Scout workshop today in Red Bluff. And Mike is mowing the lawn after a night on call. Oh such normalcy!

We head back to UCSF on Monday afternoon. Thomas has an appointment with the radiation oncologist on Tuesday morning and a follow-up appointment in the BMT clinic on Wednesday morning. Looks like Mike will be able to go. We will probably bring Mary Claire too. Thomas is doing great! He is eating more each day. He's full of energy, lots of smiles and laughter. Sarah taped a bucket to our basketball stand in the driveway at Thomas' level and now his current favorite activity is playing ball with the new "hoop".

Mike added some photos to the collection. The home page photo features some of the nursing staff and Dr. Rosen and the sign they all made for Thomas' send off from the BMT unit. We will continue our updates periodically as time permits! Harder to find time on the computer now that four kids are waiting in the wings!

Tuesday, March 1, 2005 - 1:30 PM PST

Flash Update - Mr. Incredible has left the building!!!!

Sunday, February 27, 2005 7:20 PM PST

Day 18
Another good day for Thomas. He experimented with bacon, French fry (not plural), and yogurt drink but really got into homemade chocolate chunk cookies delivered tonight by Laura Ryder. He probably ate 2/3 of one and they are big. This is progress. Theresa will soon be returning from a visit with her sisters, mother and Mary Claire in Davis. She will enjoy her entrée then.

In case you are desiring more pictures and even video clips, I have some new ones on the Shots from the Unit page. The labs and graphs are all updated. The oncology team is asking to see these trends when they round and even took a copy of the spreadsheet to give to other parents. Keeping me occupied is a project!

Tomorrow I will head back to Redding with as much of our “stuff” as possible so that Theresa can leave with Thomas easily. We will check out of the Koret Family House tomorrow. It has been a great blessing to have such a nice place to rest, shower, cook and sleep during the month here.

If Thomas isn’t taking enough fluids to stay hydrated the oncologists will arrange for him to get fluids at night while we all sleep soundly (Hah!). Since this is the only hurdle remaining before discharge he will likely be able to go home on Tuesday.

Saturday, February 26, 2005 5:39 PM PST

Day 17
Daddy's back. A short update before Thomas awakes from his nap to eat his dinner....hopefully a few bites.

The Broviac repair worked and the line was declotted. No replacement needed!

Today Thomas did some serious digging of cotton balls with Tonka type diggers OUTSIDE his room in the Unit hallway. He was supposed to wear a mask but quickly broke that rule.

Carrie left today after four days of helping out. (She is featured with Thomas on the home page photo today!) I arrived soon thereafter. Thomas woke for about a minute before falling back asleep.

Dad, Sarah and Rebecca made serious headway in preparing the house for the homecoming. We vacuumed all the dust from places most people never see. We can now eat off the tops of our cabinets. We wiped down cabinets, walls and furniture with a weak bleach solution. The sisters wiped down one-half-trillion toys with Clorox and Lysol wipes. Stuffed animals were shocked with heat in the dryer. Some toys got to take a bath in the dishwasher. I stripped beds and moved furniture for the carpet cleaning on Monday.

The long term forecast is a Tuesday discharge. Thomas has not needed a red cell or platelet transfusion in a week and is maintaining and even increasing his counts. The antibiotics have been stopped one-by-one. His former resistance to eating has been replaced by a disinterest in food. Chemo changes your taste, flavors are blunted - perhaps we should order from the Indian restaurant to spark his interest.

Friday, February 25, 2005 8:30 PM PST

DAY 16

Well, we had some excitement tonight. To make a long story short, Thomas' blew a hole in one of the lumens of his Broviac catheter. (Well, he didn't do it...the nurse did while trying to flush his line). The nurse called in George, a long-time RN from the Neonatal Transport Team to repair Thomas' catheter. We are currently waiting for glue to dry and then at 11pm the nurse will inject some clot-busting medicine into the line and try to break up what we suspect is a clot causing the occlusion. We need your prayers that this resolves the issue and we can use the line again to administer drugs, fluids and nutrition. If the line can't be made functional again, Thomas may need to have a new central line placed, which involves surgery.

Aunt Patty arrived just in time to help distract Thomas during the repair procedure. She brough squishy lizards, frogs and snakes and proceeded to place them all over me much to the amusement of Thomas. Later, she managed to get Thomas to eat part of a chocolate chip cookie. He also drank some Gatorade. This is great news! He is eating something! We had tried a chocolate milkshake, macaroni and cheese, a popsicle, pudding, and french fries (at different times!) earlier in the day.

Thomas had a GREAT night last night. Practically slept through the night for 11 1/2 hours! Pray that he can do the same tonight, that the clot-busting medicine does the trick and he doesn't need to have an IV placed in his arm in the middle of the night.

Carrie has been a great help. She and Thomas have had tons of fun together, playing all sorts of games. Tonight Carrie, Patty and I enjoyed some yummy Thai food from a nearby restaurant. Carrie leaves tomorrow in the early afternoon. Mike returns after being in Redding for 4 days, where he was working, catching up on bills, and visiting with Sarah and Rebecca. He's also doing some of the prep for our house so that Thomas can come home.

Thomas' immune system will not be fully back for at least another 6 months. Our house needs to have a spring cleaning to remove dust and possible sources of mold and fungus. So ceilings, walls, bathrooms need to be washed down and carpets cleaned, as well as the usual dusting and vacuuming. Thomas will not be able to have any visitors who have been or are sick, and he we won't be able to take him to public places where there are lots of people (like the grocery store, church, busy parks, restaurants, airplanes, schools).

No word yet on when we will start radiation, except that it will be sometime between Day 28 and Day 42. We will be down here again for about 3 weeks then.

Gotta go now, as Thomas wants me to watch a new video with him. Please keep him in your prayers tonight, as always!

-Theresa

Thursday, February 24, 2005 8:55 PM PST

DAY +15

A busy day here at the hospital. Visits from Uncle Dan, Kevin Delucchi, Patrick Hunter, Dana Davies and Aunt Patty. Thomas is winding down now. While last night was a little better than the night before, it was still a restless one. Aunt Patty might have exhausted him with shooting baskets and playing other games, so maybe more sleep tonight? I've told the nurse that is my goal!

The Chest CT scan showed much improvement over last weekend. It's "near-normal". They have decided to keep him on the anti-fungal for the full 14 day course, just in case the nodules were a fungus. The main goal now is to get Thomas to eat. If we are successful, we can go home early next week, maybe Tuesday?

Cousin Carrie had the honors of playing Bingo this week and picking the prizes. Thomas took his short 45 minute nap during that time.

Not much else to report. Our guy is feeling pretty good, still has his cough and a runny nose, and other than maybe being over-tired, is doing well. We are thankful and looking forward to the final steps toward home.

Tuesday, February 22, 2005 8:35PM PST

DAY +13

Thomas has had a great day. His WBC and ANC were about the same as yesterday, high that is. His blood pressure and blood sugar issues have disappeared. They eliminated another antibiotic and stopped his pain medication infusion pump tonight.

He's been up playing a lot today. Shooting hoops, playing with a new Fisher-Price fire engine (from Margaret Grover-Roos and family), taking apart a new puzzle from his sisters, and reading books. He's been having an especially great time ever since Carrie arrived. She's full of fun and games and lots of attention.

Thomas' lungs are sounding better every day. He will have another chest CT scan tomorrow afternoon, which will hopefully show signs of improvement as well. Pray that he tolerates the anesthesia well, as he's had trouble in the past with extreme crankiness upon waking up.

I'm hoping he settles down for bed soon (he didn't get to sleep last night until 11pm). Ooops...he's laying down now and wanting my company. Better go with the moment here in hopes of some sleep for both of us!

- Theresa

Monday, February 21, 2005 5:16 PM PST

Day +12
Thomas continues to do better every day. His counts are sky high and he will stop getting the GCSF colony stimulation factor that stimulates and accelerates neutrophil production. His WBC counts may drop down as a result. He needed platelets yesterday and hopefully his production of platelets and red blood cells will pick up because the need for transfusions is one of the reasons that his discharge might be delayed.

He was out of bed on his unsteady feet for the first time in 11 days. He played with trains and enjoyed the delivery of a bouquet of balloons sent from Aunt Rachel & family. It is time to start tempting him with water, jello, yogurt or anything that might strike his fancy. He is doing well with less and less pain medicine. As he begins to eat he will get less fluid and IV nutrition. The antibiotics will be stopped one by one over the next five days. Tomorrow the team will be back after the holiday to lay out the facts about HomePrep. Rumors involve lots of bleach solution, ceilings, carpets and plant adoptions. Soon we will learn more about the next steps, like when the radiation treatments will scheduled.

Theresa and Thomas will welcome Cousin Carrie who is coming Tuesday to help for four days. Mike is heading to Redding to get caught up on mail, bills, housework as well as a few days of work.

There are new pictures in the "Shots from the Unit" area on the Thomas links page.

Sunday, February 20, 2005 9:42 AM PST

Day 11
An astounding thing happened last night, but first let me get you up to date. Thomas continues to do better each day. He is getting his attitude back and being more resistant. His ANC was 830 today! If he stays over 500 for three days running then he gets to venture out of isolation, into the hallway outside his door IF he wears a mask.

Sarah is here with Mimi and Papa Dave. Thomas and his parents are enjoying their company.

There are a couple of issues that have cropped up. One is his blood pressure. It’s running higher than we like (140’s/80’s) unless he gets a pressure lowering medicine. This might be because of extra sodium building up. His IV nutrition is being adjusted. Another issue that cropped up today is that his glucose is low despite the IV nutrition. More discussion and investigation planned for this as well.

Joanne & Kevin provided several meals this weekend. A bottle of cleverly labeled Great White Blood Cell beer was the crowning jewel. My Cousin Renee and her husband Dan brought a tasty lunch on Saturday. Thanks!

Oh, about last night. Theresa and I wandered away from the hospital, together. We found a historic bar and played Boggle and backgammon while enjoying beers that were on the house. We’ll be back there soon.

Friday, February 18, 2005 8:30 PM PST

Day 9
Oh how things change!
A week ago Thomas started feeling miserable. His mouth hurt and his eating and drinking – even his favorite things like watching "I Dig Dirt" and cuddling his blanket - came to a grinding halt. He started having fevers and because they never went away, antibiotics to cover just about any possible bacteria type were added one by one. Chest X-rays, blood drawn and results pondered, IV nutrition, IV pain infusion, oxygen, suctioning. Swollen face, eyes closed, moaning was his only voice. (Can you tell Dana and Theresa have fed my creativity with novels?) His anesthesiologist father, cardiac nurse Aunt and pulmonologist Uncle helpless but to wait for natural, slow improvement. And it comes. In the form of better coughing, being more alert, less swollen, eyes open, facial expressions. His white count, “less than 0.1” for six days comes back as “0.1” – his father humors that this is significant and later that day a “0.2” is measured – progress! Smiles are returning, attitude is again that of a feisty two year old. He wants Momma and Nissie with compensatory earnest. His cells are back, allowing healing, comfort and strength. Hopefully not a mirage, but a new continent of health.

Watch the WBC Graph with us as it rebounds!

Mike

Day 10 - Early News Alert!
Today's WBC count is 0.5 ! His Absolute Neutrophil Count went from 40 to 230. We're on our way, Movin' on Up! See neutrophil explaination below. Thomas' Neutrophil count needs to be greater than 500 for three consecutive days before he can come out of isolation.

Thursday, February 17, 2005 7:00 PM PST

Day 8

Thomas had his bronchoscopy at noon today. The procedure went well, no complications. He recovered in the PICU until 5pm and then came back up to his BMT room. He's running a fever of 102.4 right now. He was able to take some Tylenol for the first time in a few days, so hopefully that will help make him more comfortable by lowering his temp. The good news is that he is more alert today. Keeping his eyes open for longer periods of time and communicating with us. He's sorta watching a movie right now.

If you need another visual, imagine me riding on a guerney through the halls of the hospital to the OR, holding Thomas with both of us covered head to toe in white sheets and his IV pole covered in white sheets. I called it our little fort. If it weren't so serious, it would make a good picture...

Thanks for all of your prayers and positive thoughts. We are happy that he did so well with the bronchoscopy. They should have some preliminary results from the cultures within the next 24-48 hours. Meanwhile, we are hoping to see his counts start moving up SOON.

Mike and I are both getting anxious to see him doing better. It is SO hard to see our son so miserable. He is being so brave though, toughing his way through this ordeal. He's loving his Nissie blanket again as of tonight, so that is heartening. He hasn't even recognized it in days.

We have another excellent meal tonight, this time courtesy of Maria Chaves - a friend from grad school and Kaiser. Thanks to Maria, all the other meal providers, and those that have spirited us along with supportive guestbook entries. Keep up your good prayers. They mean so much to us.

LATE BREAKING NEWS!!!
Thursday, 8:45pm

Thomas smiled! He's coming back! He insisted on taking over his respiratory therapy, waving around the oxygen tube like a weapon. Now he is sitting up watching "I Dig Dirt" and even attempting some hand motions with the song. He's playing with the pediatric oxygen mask that we use for chest PT, sticking a straw in the holes. It hurts him to cough and swallow, so he is trying to hold those in. But what progress! We are encouraged. AND he's breathing and saturating well without the blow-by oxygen. Daddy is out buying more technology for our room. Update on that to follow...

10:30 PM More Latebreaking News!!!
9pm labs are back and Thomas has a White Blood Cell count of 0.2!
See the WBC Graph!!

Wednesday, February 16, 2005 6:30 PM PST

DAY 7
Earlier today Thomas had a chest CT scan because he continues to have difficulty breathing and continues to run a fever (currently 102.9). The results show some fluid build up in his lungs and some spots that might be a fungal infection. We conferred with the attending pulmonologist, Infectious Disease docs, and the attending physician here on the Bone Marrow Transplant unit to decide what to do next. The plan is to change him to a broader sprectrum anti-fungal tonight, start regular chest thumping and repositioning to stimulate his coughing, and do a bronchoscopy tomorrow or Friday. A bronchoscopy involves running a scope down his throat into his lungs to visualize and get a sample of the suspicious spots and culture them out. (Uncle John will clarify my description if necessary!) If the bronchoscopy is successful, it might tell us more specifically what type of infection might be going on and how to treat it. It is likely that he will be in the pediatric ICU (PICU) after the procedure. The procedure will be done in the OR under general anesthesia. He may need to be on a ventilator afterwards, thus the stay in the PICU.

This is all not news we wanted to hear. But we are glad to have a plan. The team is encouraged that his lung function is pretty good even though his CT shows these problem areas. However, his status could change quickly and it is important to address this as soon as possible. Of course, the most important thing that will help is for his white cells to come back. That could happen anytime now, or not for another week.

Please pray that the new anti-fungal will start treating his lung spots and that his white cells start materializing soon. Please also pray that we can keep him as comfortable as possible through this, and that he does not have any complications with the bronchoscopy procedure. And pray for us because we are tired and worried.

Aunt Lottie sent a neat homemade video that featured his cousins Bridget and Erin and David and various dirt moving equipment in action around Bend,Oregon. Thomas sat up and even opened his eyes when we turned it on. This is the most alert he's been a a couple of days! The package also contained homemade cards, brownies, chocolate kisses and magazines for the parents!

We have a yummy dinner to eat tonight, courtesy of Dana Davies, so we will try to enjoy that and relax as we can.

Tuesday, February 15, 2005 8:00 PM PST

Day 6
Thomas had a stable day. Nothing new except some platelets, extra potassium and albumin. He has had a few doses of Lasix to get rid of extra fluid and he is occasionally opening his eyes. He is much more calm on the fentanyl PCA.

Mary Claire came to see us with Theresa's mother and got to see Thomas through the window. We took her out to dinner last night and lunch today while Jane/Dida stayed with Thomas. Mary Claire has been a trooper with the separation and really likes being with her "Dida". They headed to San Rafael to visit with Aunt Patty overnight.

We love your words of encouragement in the guestbook.
Be sure to see the other Thomas Links

Monday, February 14, 2005 5:00 PM PST

Day +5
Thomas is holding his own. It has been difficult over the last two days. The chemotherapy affects all fast growing cells. The only obvious effect of the chemo he has gotton in the past has been reduced appetite and his hair loss. They has warned us that he may get mouth sores then but it was never a major problem. The high dose chemo for the transplant is a whole different story. His entire intestinal tract is affected, his hair and skin will change but the biggest battle since early yesterday has been his respiratory system.

The lining of his lung airways is inflamed and secreting fluids. Little tykes are more susceptible to this because their airways are small and a layer of fluid that is thin for an adult can close off a small airway entirely. So the challenge is this: Keep him oxygenated despite his resistance and twirling body, suction him even when he is fighting you and keep 14 tubes and wires (I just counted) untwisted. His face is swollen now so he doesn’t try to open his eyes much but is still darn effective grabbing the suction stick or Tylenol syringe. He still has spunk and occasionally stands up or climbs Mt. Pillows up the back of the bed. He nodded enthusiastically when I asked if he wanted to read the “Owl” book but was back asleep the next moment. After taking Tylenol he clapped his hands when we said “Yeah”. He’s still our Mr. Thomas, but a miserable one. This will likely continue until his white counts return – another week at least.

I couldn’t help think of the endless struggles in “The Passion” today while fighting through a coughing/suctioning routine. It goes like this: If he is lucky enough to fall asleep for a while he wakes up needing to clear himself out. His cough is weak with the sedating meds so pissing him off by patting his back and suctioning his mouth gets the most stuff up. By then his oxygen saturation has fallen to 50-70% and so I use the nonrebreather oxygen mask to boost it up then switch to humidified blowby oxygen and aim for the mid 90’s. Sometimes he falls asleep but often he does endless sharkrolls which is great fun with all the lines.

He is getting Ativan in doses that would knock me out. His Dilaudid is being swiched to fentanyl (a narcotic I use every day in the OR). He is now on five antibiotics/antifungal agents because his fever never went down as they were added. Neutropenia does that.

I put some new pictures up – look in the Thomas Links page, in the Shots from the Unit section.

Sunday, February 13, 2005 6:45 PM PST

DAY 4

Thomas is hanging in there after a very rough night and a touchy morning. Mike was with Thomas last night and reports that Thomas (and Mike) slept for about 1/2 hour. By early this morning, he was having a lot of trouble breathing and was clearly retaining fluid. We all became quite concerned that he might have pneumonia. Uncle John, family pulmonologist, was about to head out of town but came back to the hospital to do a consult and hold our hands. Thomas got a chest x-ray, which showed that his lungs are clear and that most of his distress is in his upper airways. This was great news, as a pneumonia would be VERY difficult to fight without any immune system. Treatment then included a dose of Lasix (a diuretic), a unit of red blood cells, a visit from the respiratory therapist to administer Atovent to loosen his secretions and help him cough them up, and continued blow-by oxygen and occasional oxygen mask.

We were all very scared this morning, but Thomas has stabilized and slept most of the day (off and on) and seemed relatively comfortable. John and Jean left to go home. Mike went to the Family House to nap. Rebecca and Sarah went also to rest and watch movies. Mimi and Papa Dave stayed with me this afternoon, while I mostly held Thomas while he slept. Aunt Patty came over from San Rafael for a visit and brought a birthday present.

Mike and the girls are now going off to find dinner and get a Ghiradelli hot fudge sundae (and hopefully bring one back for me!). Papa Dave just left to get Mexican take-out for himself, me and Mimi.

Our nurse Aimee has been great today. Dr. Koerper and Dr. Kristen have been reassuring. Mike, Sarah and Rebecca enjoyed the ice skating last night and managed to come back without injuries.

Please pray that Thomas has a more restful night and that he remains stable. He still exhibits his feisty self in brief moments of wakefulness and we are grateful for that.
--Theresa

Saturday, February 12, 2005 11:50 PST

Day 3

HAPPY BIRTHDAY THOMAS!

Thomas is 2 years old today. Uncle John arrived this morning with birthday streamers to decorate the room, and doughnuts for the staff. Good thing we celebrated Thomas' birthday before we left for the hospital because he is in no mood to celebrate today.

He had a rough night. We've increased the level of pain meds (3x since 11pm last night). He received a platelet transfusion in the early morning hours. He's now on blow-by oxygen to keep his O2 levels up. He's breathing shallowly because of all the saliva in his mouth/throat that is too painful to swallow, and because of the pain medication he is on. As if all that isn't enough, we were overcome by skunk fumes in our room in the middle of the night. (The nurse told me that sometimes skunks get caught in the intake vents outside...lovely!)

Our goal today is to keep him comfortable. I'm sure he will be happy to see his sisters and Mimi and Papa Dave later today. We're looking forward to a super celebration next year on February 12th. For sure, the best present Thomas has received this year is the support and prayers of all of you.

-- Thomas' mother

Friday, February 11, 2005 9:22 PM PST

Day 2

Uncle John writes: While Thomas is resting, his on-site supporters are rooting for White Cell Recovery, but we know it takes a while. Thomas has a sore mouth and probably sore tummy too – it is chemo-related mucositis. He is able to drift in and out of sleep with the help of his Dilaudid infusion. He’s had a fever off and on (as high as 102). This is another expected and common issue with patients who have little to no white blood cells (medically know as “neutropenia”.) Thomas is now on 3 antibiotics, plus preventive doses of an antifungal and an antiviral medication. That’s 5 infection fighting medications for those who are scoring at home. Add in the IV nutrition with lipids on the side and he’s got lots of stuff running in his valuable “tubies” via a four pump IV unit, his PCA pump, and a syringe pump that is joining the fun this evening.

Golden Gate Park provided some diversion and exercise for Theresa & Aunt Jean this afternoon. Mike had last night’s overnight duty. He finally took a shower back at the Family House at 5 PM to everyone’s relief! A feast was delivered by Waiters on Wheels thru the generosity of Margaret Grover-Roos.

Tomorrow Sarah and Rebecca arrive for a visit with Mimi & Papa Dave (Mike’s parents), and Mike will take the girls to the UCSF Valentine’s Day ice skating event at the Yerba Buena Gardens tomorrow night. Mike’s working on getting Dr. Koerper, the attending doctor, to go also – as it turns out she’s a budding figure skater!

Thursday, February 10, 2005 6:01 PM PST

Today’s update by Aunt Jean: Theresa had night duty last night with minimal sleep. Thomas was somewhat restless. Theresa left the hospital around 2pm for food, shower and a break. Thomas has been more comfortorable today. He is on a Dilaudid drip and had one small dose of Ativan which has really helped with his comfort.

The big excitement of the afternoon was at 2:30 when Uncle John and Thomas played Bingo (shown via TV from the Peds ward playroom). With skill they won a toy power tool. His vital signs are stable with a big drop in his liver enzymes today (good news). Uncle John says Thomas’s lungs sound good and the resident doctor ordered a chest x-ray today. Mike, John and the resident say it’s clear. The radiology report says so too!

A care package arrived today from Caroline Wulzen and family -- a board book featuring "diggers and dozers" and a new DVD of children's songs. (Caroline and Theresa worked together at Kaiser). Thomas is currently enjoying the new DVD on the portable DVD player set on his bed.

As the sun sets on the sunset district we count another day toward Thomas’ recovery……(anonymous poet, Jean disavows responsibility)

Wednesday, February 9, 2005 9:00 PM PST

Big Day for Thomas - Stem Cells Return!
Thomas received his stem cells today – on schedule. After a visit from a lay minister with ashes (for Ash Wednesday), our room got busy with the preparations. Starting at 9:30 am, it took about 40 min to complete the process of thawing each of three 30cc bags in warm water, transfer the cells into the IV set and drip them in. Thomas did well with no fevers, blood pressure changes etc. The new picture on the front page is Dr. Koerper holding the first bag of stem cells before administration.

Everyone talks about the smell that fills the room because of the preservative that the stem cells are packed in. It happens! The staff put some peppermint oil – soaked cotton balls in medicine cups to mask the smell. We are told it is proportionally more intense with bigger transfusions in larger patients, so it’s good that Thomas is only 25 lbs. The smell isn’t described easily. Theresa says it is like an Odwalla Super Protein drink.

Thomas has been in a lot of pain today and has been vomiting every couple of hours, usually on his “Nissie” (his blue blanket). He occasionally asks for milk or juice but doesn’t do much with it. His mouth is starting to show the effects of the chemo by being whitish.

We had good news with his labs this morning - his liver function tests are lower. This means he can start IV nutrition tonight, which he needs. He hasn’t eaten anything since Sunday.

He had Dilaudid a couple of times today and he is now on a PCA pump that delivers a continuous infusion of pain medication. The nurse is able to give a bolus of pain meds when necessary. He settles down and either sleeps or watches a video after getting a dose. Hopefully the infusion will make it less of a rollercoaster.

So now we wait…. Ten to 30 days for his white blood cells, platelets and red cells to return. Right now his stem cells are making themselves comfortable in his bone marrow where they will divide and remember how to turn into the cells that eventually mature to become white and red cells and platelets. He will get platelet and red cell transfusions every few days. The lining of his mouth and esophagus will likely slough off (which is why he needs pain meds and IV nutrition). His GI tract will not heal until he starts making his own white blood cells.

Please join us in praying for rapid engraftment and return of blood cells, control of Thomas’ symptoms, pain and nausea as well as peace and rest through the next 10-14 days “in the desert”.

Tuesday, February 8, 2005 8:33 PM PST

GUEST JOURNALIST - Uncle John Gasman
Today is Day -1, and Fat Tuesday. Thomas is doing pretty well, but his liver enzymes are quite elevated, about 15 times normal. This is hopefully a short-lived chemo effect, but not an indication of "VOD" which is a big problem that can be seen with pre-transplant conditioning regimens.

His chemo is complete, and he gets his purged, previously harvested stem cells back tomorrow on "Day Zero"

He spent last night with his mom, and woke her up about 3:30 for some quality time of videos and books. Mom loves that! He slept in this morning and Dad went to a conference downtown. Uncle John met Mike down there and they trolled the waterfront together for awhile. Uncle John is in trouble for being unable to find Mike a hot fudge sundae, and for making him walk "when there is a perfectly good muni train right there!"

A care package with toys from Margaret Grover-Roos arrived today to entertain Thomas.

Tonight, Theresa and Jean are out of hospital getting some fresh air and a knitting lesson. Dinner was brought by Lori Sloss' aunt and uncle Don and Joan Green, who produced great pasta and salads to sustain us. Thomas drank milk.

Thomas took very short naps today, so we expect great sleep tonight, he's winding down as I write this. Thank you all for your prayers, concern and support as Mike, Theresa and Thomas endure the captivity of BMT isolation!

Mike: Let's give a hand to our guest journalist. What John didn't tell you is that he shared one of Thomas' short naps.

Monday, February 7, 2005 1:45 PM PST

DAY -2

Thomas had a bit of a rough evening yesterday. He threw up a couple times, desperately wanted to go out of his room in search of some cheese (only Colby-Jack will do for him and they don't have it here at the hospital), and then decompensated when I left the room to get something to eat. After a small dose of dilaudid, he calmed down.

Fr. Alan showed up around 7:30pm to visit, and even though Thomas was a bit glassy-eyed, he immediately requested that Fr. Alan do the ball trick. This involves throwing an imaginary ball into a paper bag and Fr. Alan making a smacking noise with the bag to imitate the ball hitting his mark. Well, I think Thomas kept me and Mike and himself busy throwing and kicking "balls" into the bag for almost 30 minutes! Finally, Fr. Alan HAD to go (poor guy). We managed to get Thomas sponge bathed, into his jammies and medicated for the night before he fell asleep at 8:30pm (a record early bedtime for him here at the hospital).

Mike stayed at the Family House last night. Thomas had a good night. No more nausea. Did wake up after the 4am lab draws and wanted me to entertain him by reading books (something he would never pull with his father!) Thomas got a unit of packed red blood cells this morning after having a hemoglobin reading of 6.7. His energy then improved dramatically and we played "Ernie" on the computer and he even played with his trucks for a while and sang the "I dig dirt" song! Clearly, he hasn't totally succumbed to the effects of the chemo yet! He also got a bolus of saline fluid, as they think he is a bit dehydrated. The doctors say they will start the IV nutrition tonight.

He's conked out now taking a nap. Mike is at the conference and I am catching up on e-mail. Better go eat some lunch now before he wakes up...

Night (-2) 10 PM
John and Jean arrived and we feasted on dinner provided by Maria Bautista and leftovers from Thomas' trays. Thomas had a lot of vigor tonight and enjoyed his visitors. He did end up getting sick as I was getting him ready for bed, but fell asleep peacefully soon after. See the video clip of Fr. Alan using the links page to the BMT unit pictures. Okay, I'll spoil you - click on the blue link. You may not get the help next time though!

Sunday, February 6, 2005 3:53 PM PST

DAY -3

Thomas is having a quiet afternoon again. He's napping here in his room and Daddy is napping ad doing laundry at the Family House. I walked the 5K route of the San Francisco 1/2 Marathon / 5K run this morning with my friends Joanne and Billi. It was a beautiful morning here in SF. We met up with Patty afterwards, as she finished the 13 mile run. It was nice to be outside and have a chance to talk about something other than cancer and chemo for a couple of hours.

Meanwhile back here I guess Thomas was having a very cranky morning. Dr. Horn suggested giving him some Dilaudid (a pain med) to see if that would help. He napped for about an hour. He was sitting up watching the Puppy Bowl on Animal Planet when I got here. Aunt Patty came with me and said hi at the door (she has the tail end of a cold). Thomas and I read his new Finding Nemo book, a gift from the Moons in Redding.

He still has a runny nose and a cough, so they did a nasal swab again this afternoon to test for viruses. (A very unpleasant procedure where they squirt saline into his nose and then suck it out with a suction tube...It is so hard on the mother to keep doing these things to him!) His lungs sound clear. His blood sugar is running on the low side, probably because he has stopped eating. I'll see if I can get him to take some apple juice when he wakes up. The resident said they will add some more glucose to his IV. The good news is he is done with the chemo and only has 2 bags of fluids hanging on his IV pole!

He's pretty much doing what is expected at this point, they tell us. Uncle John and Aunt Jean arrive tomorrow, and Daddy goes to a medical conference here in town for the next 2 days (Monday and Tuesday). I'm considering starting a knitting project (don't laugh). Haven't knitted since I was 8 probably! Kate will be here next weekend and might be able to rescue me from any mishaps I have with yarn and needles. More updates on this project idea to follow...

Saturday, February 5, 2005 7:25 PM PST

Thomas' condition has deteriorated. He is now watching TWO movies at the same time. He has the monster truck video playing on the room TV and Toddler Tunes on the portable DVD (thanks Dida) sitting on the bed. (What do you expect from a guy whose father is working on two computers (not to mention remote servers) at a time in this hospital room?!)

Thomas’ naps are a little longer each day. Today he slept from 11:45 till 3 pm. (However, he didn’t go to bed until 10pm last night and was up between 4am and 5am, wanting to play computer games with Theresa). He has less energy and is eating a lot less. The doctors are impressed at how well he is doing at this point, especially the fact that he hasn’t had much nausea or any vomiting. Now that we’ve said that though, I’m sure it will start soon! He is actively resisting the mouth care with the sponge on a stick, so we have given that up. We started giving him his glutamine in a syringe (as opposed to with pear sauce, as he won’t eat that anymore). We want him to take the glutamine as long as possible, as it is supposed to help shorten the duration and lessen the severity of the mucositis (mouth and GI tract sores). Dr. Horn told us today she expects they will start Thomas on IV nutrition on Monday after his chemo ends. We are on track for him to get his stem cells back on Wednesday. Amber is hanging his last bags of chemo (ever?!) over the next hour.

I added a page of pictures of Thomas and his family in 2003 . See the page of Thomas Links. I am now borrowing webspace from my mother – let me know if any of the links quit working.

Theresa couldn’t be happier to report that her nasal swab for the virus test was negative and mine was “insufficient”. We must however, continue to wear masks in the room and wash ours and Thomas’ hands often.

Carolyn Marley brought us a suitcase full of food today (literally!). We are set for the weekend! It included a 6-pack of microbrew IPA (India Pale Ale), so Mike is thrilled. Carolyn and her partner Jon are friends of Theresa’s from Stanford, for those of you who don’t know them. They live in Berkeley with their two children, Matt and Krietta.

We are grateful that Thomas is doing well so far. Thanks for all the entries in the guestbook and e-mails (it means a lot to hear from you guys!). And thanks especially for your continued prayers for our little guy.

Tomorrow morning (Sunday), Theresa is walking in a 5K fun run/walk with her friends Joanne Slaboch and Billi Romain. Patty Flynn is running the ½ Marathon that goes along with the walk in Golden Gate Park. The event is benefiting, among other charities, the Koret Family House where we have been staying.

Friday, February 4, 2005 5:26 PM CST

Thomas has been taking a long nap (3 1/2 hours) this afternoon. Mike has been hanging out with him all day, while I have been resting and taking care of a couple errands. Now it's time for Mike to go back to the Family House to take a shower and freshen up!

Yesterday Joanne and Kevin brought sandwiches for lunch. Dana Davies, another friend from Kaiser days, brought dim sum and beef noodle bowls for dinner. Thank you, thank you!

Mimi and Dida report that Sarah, Rebecca and Mary Claire are doing well. Rebecca is spending the weekend at Dida's with Mary Claire. Sarah is going to Griffeys for two nights, and to Chico tomorrow for an all day Girl Scout workshop.

Must go now. Thomas is awake and he is due for various things...like a diaper change, mouth care, and a sponge bath. Mike and I got swabbed today to check for viruses. Results to be reported later...

- Theresa

Wed/Thursday, February 2/3, 2005

Thursday - Yesterday was uneventful. Thomas is truckin' along. Literally. Between videos, trucks and his favorite steamshovel shirt he has been "Diggin' Dirt". Dirt consists of sterile cotton balls and marbles. He continues to eat without apparent nausea, has good energy and sings his way through the doctors visits. Amber is caring for us today - a special treat. New web content (lots of Pictures)on the Thomas Links Page. If you have a high speed connection -and- are patient, there is a video clip too!

Wednesday - Thomas started the Chemo today at 9:45. He will get 24 hour infusions of VP-16 and Carboplatin for four days, finishing on Sunday morning.

He had no problems with nausea today and played hard with two naps. He gets to have a sponge type bath three times each day because the VP-16 can sweat out and hurt the skin. In order to control the inevitable mouth sores he has a baking soda mouth swab routine and is taking vitamins and glutamine. He seems to like the blueberry flavored glutamine from GNC when it is mixed with Gerber pears. He only asked to 'walk' once today and seemed fairly content to stay in the room.

Theresa started getting a sore throat today and we were both wearing masks to reduce the chance of infecting Thomas. Thomas slept alone in bed last night so I stayed with him again tonight because he would never let Theresa sleep in the other bed.

As the chemo levels build in his body he is more likely to get nausea. We will hope that his appetite holds a while longer. The greatest risk is with toxic effects of the chemo on his liver. Venoocclusive disease risk is 40with varying intesity. The mouth and intestinal surfaces will get raw because of the effect of the chemo on these fast growing cells, this may peak in 10 -14 days when his counts have dropped. Keep up those prayers.

Thomas is being held by Trece, our family's friend and helper. 3/24/04

Tuesday, February 1, 2005 10:00 PM PST

We arrived at UCSF this afternoon and after a visit to radiology for a chest X-Ray and a nasal culture for viruses we began the ritual of sanitizing Thomas and his belongings to enter the isolation room.

The room is one we have stayed in before and should be comfortable. It has a daybed for when Thomas doesn't want us curling up with him. Our Family House room is great. It is at the house close to the hospital and has its own bathroom. Theresa had been hoping for these accommodations since she saw it redecorated by a team after Thanksgiving. I sent her over early for the surprise after I moved us in.

Thomas enjoyed running the halls for the last time. He conked out in bed. I’ll see how long he lasts before demanding that I join him.

His virus culture came back negative so we will proceed with immune globulins, hydration, an injection of blood thinner tonight and the chemo starts tomorrow at 9 AM.

New Feature: You can view the pictures that have graced this page in the past- Click here: Past Front Page Photos

Monday, January 31, 2005 1:51 PM PST

We celebrated Thomas' 2nd birthday yesterday - a few weeks early. His Godparents and Theresa's mother joined us. Thomas enjoyed his new batting tee and was quickly making family room home runs. The picture shows him with his Godparents and the tee. Dad made a special brownie ice cream cake.

Today Thomas visited St Joseph School where the students have been praying for him since August. Later he watched some excavators ‘digging dirt’ – his favorite thing; before being inside for weeks.

Thomas is doing great and is as ready as ever to head to UCSF tomorrow for the Stem Cell transplant. We will let you know when he is settled in.

Wednesday, January 26, 2005 9:10 AM PST

Thomas spent 10 days with Theresa at UCSF waiting for his counts to come up. They came home Saturday, 22 Jan. He got several platelet transfusions and one red cell transfusion. Of course, most of the time he was happy and playful.

The plan for this week has changed. He had his CT, heart ECHO and kidney function test done last week while he was there. Yesterday he had his bone marrow biopsy adn today he will have another MIGB scan. I am driving down with the older girls and Theresa and I will meet with the Bone Marrow Transplant team for the consent conference. The start of his stem cell rescue was pushed back until next week. He will be admitted on Tuesday, Feb. 1st and begin the high dose Chemo on Wednesday, Feb 2nd. Ash Wednesday, Feb 9th, he will get his stem cells back (collected in Oct) - this is termed day ZERO. Then we wait in isolation for his white count to return. More later!

Sunday, January 23, 2005

Welcome to Thomas' Page on Caring Bridge! This resource will allow us to keep in contact easier and allow Thomas' supporters to have a Web Site to check for updates, view pictures and leave remarks in the guestbook.

We have collected all the past updates and pictures and have made them available on our own family web space: Early Updates compilation with Pictures

Friday, January 21, 2005 5:36 PM CST

Click here to go back to the main page.

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