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Thursday, September 25, 2003 - I’ll start this update by saying that our lives have never been better, happier, or more fulfilling than they have been these past four months.  Doug and I have enjoyed watching the children mature, both in body and spirit, over the summer.  We were able to spend a great deal of time together as a family, taking some short day trips as well a 10 day vacation to Virginia and South Carolina.  There were also days when the children were off, away from us at week long camps, day camps, making friends and memories of their own.  

Both children went away for six days in early July, to attend Camp Quality.  Once again Jessica and James were blessed to have Tiffany and Jeremiah as their companions.  This was the third year for Jessica and the second year going to camp for James.  Tiffany and Jeremiah never leave our kid’s sides while at camp.  I hope to have photos to share from camp (posted to the web), at some point, so that you all may see what a wonderful job the people at Camp Quality do to make the days fun for the kids.  This year the camp brought in circus trainers.  Each day the kids spent a great deal of time learning all sorts of circus tricks and practicing to put on a performance for the parents on the last day of camp.  James wanted nothing to do with the performance.  In fact, he wanted nothing to do with the practices either-once he’d learned that the kids would be putting on a show.  This was not his cup of tea, but it was a huge hit with Jessica.  She did a wonderful job as a trapeze artist.  I actually had tears in my eyes watching these kids perform, knowing some of what they’d been through medically, and how hard each worked to be in the show.  

Jessica and I had heard of a Cleveland camp, based out of the Natural History Museum, where each day the kids would travel to two other museums, either by foot or shuttle.  We thought this would be fun for me and James too, allowing us some time together.  Of course, we did not consider how long the days would be (9am-5pm daily) at the museums.  Jessica grew tired of it all by day 3, but she stuck-it-out.  I think she would rather have just spent her time with me and James; we never ran out of fun things to do-  although, we did run out of energy a few times.  James and I spent every day at visiting different places:  the Zoo, Natural History Museum, the Rainforest, The Children’s Museum, and other fun things-all in 5 days.  Next year the kids and I will do our own day camp.  As it turned out, James and I missed Jessica as much as she missed us!  

In August Doug and I took the kids on our summer vacation.  Like last year, we again headed to Virginia Beach.  This time, however, we stopped for three days in Williamsburg.  What fun we had there.  We opened and closed Bush Gardens, and although a bit rainy and cool, this was our favorite amusement park.  Jessica decided that she really likes roller coasters; I think she rode all but one (because of height restrictions).   Her favorite coaster was the looping-twisting coaster whose name I forget . James, on the other hand, decided that he despises all roller coasters except one.  Poor James, his little tummy does not tolerate steep hills or spinning rides.  He and I found plenty of other rides that were just right for the both of us, while Doug and Jessica enjoyed the more challenging ones with longer lines.  On day two we opened and closed Water Country USA; what a BIG place!  Mother Nature gave us perfect weather for the water park.  There was so much to do there, including standing in long lines, but our two favorite rides were the Hubba Hubba Highway, and the racer slides.  On day three we headed over to James Town.  This part of the trip was tolerated by the kids; they found some things to enjoy, but really had their attentions focused on getting to the beach and to their boogie-boards.  Hey, who could blame them?  We, as parents, however, felt it our responsibility to at least attempt to help the kids better understand our history.  In the end there was a forced cooperative learning experience; the kids came away knowing a great deal about how, why, and by whom this country was settled.  More importantly, the kids did end up enjoying James Town (we made them), so they could get to the beach.  

This year we stayed again in the less busy northern end of the board walk at Virginia Beach.  The resort we stayed at (can you call a resort a resort when the service is terrible, the linens are dirty, the pool is cold-as are the staff- and the food is terrible?)  That was the only disappointing part of the trip. And…if one could ignore the dirty bed spread and crackers beneath the bed, one could say our room was lovely.  We had a blast at the beach, even with the rain and clouds!  Jessica built castle after castle, which Doug and I carefully guarded, as James (the rascally pirate) dance about, all the while singing,  hoping to crash in the walls-perhaps for the pleasure of hearing Jessica scream.  There were plenty of waves to take down the castles and to provide the kids with rides on their boogie-boards.  When we were able, we pulled the kids from the beach one day, rented bikes (intended for board-walk use) and headed to the state park for a little mountain bike action.  The trails were VERY muddy, as were we and the rented bikes.  James and Jessica made it four miles to the turn-around point when a terrible thunder storm blew in.  Jessica and Doug rode back to get the van while James (who could ride no more) and I looked for shelter.  All that was near by was a dark and stinky, bug filled porta-john-YUCK.  This was to be our shelter if the lightning came closer.  I found a very long stick to hold the door open, let in some light and, more importantly air, while James….well, you know, he had to go.  Anyway, my dear son said, “Mom…you’ve gotta try this place, REALLY, it smells so good.”  The worst part is that he was not joking; he really liked the odor.  We eventually came across an unlocked, unmanned ranger check-in station.  There we discover bug spray, which we badly needed.  Eventually James and I were rescued by Doug and Jess.  Later, back in our hotel room, we learned that just a few miles from where we were biking a tornado had touched down and caused damage.  Our stay at the beach lasted five days.  But the trip was not yet over.

We drove from the beach through North and South Carolina to visit Aunt Shelly and Uncle Craig.  They were wonderful hosts!  We all loved the mountains near their home.  Craig and Shelly took us hiking one day and on the other we went canoeing.  The kids felt right at home there.  Our trip was ending.  We needed to return home, back to our dogs, our cat, our fish, our sea monkeys, and back to our rabbit.  We’d had a wonderful summer.

In fact, summer was such fun that we almost did not notice the go days flying buy us, leading us back to where we began, back to school, back to our daily routines, back to work, back to reality.  For us, it was not long before we were faced with some painful reminders of life’s realities.  We have been reminded that all things living must one day die.  Sometimes God helps us by giving us our lessons in little steps.  For our kids, these scaffolding lessons began in the summer as we watched our oldest dog Dobbin become less able to get around.  Then, three days after returning from our vacation, Jessica found Dobbin in the basement…dead.  Jessica’s screams still ring in my head, but the thing that broke my heart was the pain poor little James felt with Dobbin’s  passing.  James spent time with Dobbin, after she’d died, hugging her, petting her, talking to her.  It was a time for James to learn one of life’s lessons.  

Perhaps Dobbin’s death was God’s way of preparing James and Jessica  for what would come later,  perhaps it was a way of preparing us to help our children deal with other losses, deeper losses.  Because it was not more than a few weeks latter when we would learn of Doug’s Grandma’s (Grandma Brayman)  worsening health.  As it turned out, she was called home to God not more than days after Doug visited her.  Dobbin’s passing bridged our discussions with the children.  James and Jessica were better able to understand the sadness and loss that they and others felt with Grandma Brayman’s death.  Grandma Brayman’s loss is great;  she touched so many lives in such gentle, kind way, and knowing way.  Somehow, through the sadness, God balances our life’s lessons.  As we teach our children that all things living have an end, so we too teach them that life begins anew.  

We are so happy to have learned to that Craig and Shelly are expecting their first.  I’d sensed there might have been a little secret that Shelly and Craig were keeping from us during our visit there in August.  We are very excited about this news!   

More things exciting….Tiffany and Jeremiah have asked Jessica and James to be a part of their December  wedding.  Jessica is very excited (and a little nervous) to be lighting the candles during the ceremony.  James will be the ring bearer.  He was initially reluctant…scared (but denies it).  He since thinks it is a pretty cool job, especially since learning that the vests will be titanium (silver), which is his favorite color.  We are honored that our children have been asked to participate in this wedding.  Each of us is excited about traveling to Kansas City, MO, not only will we enjoy the wedding celebrations, but also we will have great fun exploring all that there is to do Crown Center, Hallmarks headquarters.  Outside of our hotel there will be an ice-skating rink.  From inside the hotel, we have access to Crown Center, the theaters, shops, really neat restaurants (one where your burger is delivered to your table by train), Union Station, and a Science Center with 3D movies.  It is not difficult to imagine how fun it will be having all of this without having to go out into the cold December air (except for the ice-skating, and the all season outdoor pool).   

Other exciting news:  Jessica has changed schools this year (yes…again-school #4).  Actually, she has returned to the school she attended in Kindergarten.  This school has teacher who are trained to work with children with a variety of talents, abilities, as well as challenges.  Jessica was placed in a regular classroom, where five students she remembered from Kindergarten were also assigned.  Her teachers, Mrs. A. and Mrs. T. are wonderful.  Jessica is happier than I have seen her since she was a Lake Ridge.  I can not begin to explain to you what a relief this is for me.  Other fun things…Jessica is still riding horses (weekly); she loves jumping, and is doing very well at the barn.  She REALLY wants a horse, but the time is not yet right.  Jessica is dancing again, and dreaming of being in the nutcracker; a dream from before she became ill.  James too is busy enjoying being 6 years-old, in grade-one.  He’s interests and talents are in soccer (defense), building bionicles, using his incredible math skills to astound us, and studying to be a paleontologist.  

As of yesterday, September 23rd, 2003, it has been four years from the day Jessica was diagnosed.  And, very symbolic of our journey, we are headed to Traverse City, MI.  There we plan to revisit the dunes as well as some old memories.  We have not laid eye nor foot upon the sand dunes since the weeks before we discovered Jessica’s cancer.  Now seems like the perfect time to say “hello” to an old friend we’d left behind.  It also seems the perfect time to say goodbye to some old memories, memories to be scattered to the wind, to be forever lost amongst the countless grains of sand.  As time passed,  outside forces have forever altered the shape of the dune, so have been altered the shape of our lives.  Yet, when we return to the dune, when we look closely at its make-up, what we will see is the dune:  changed in shape but not in character.  And, like the ever-changing sand dune, our make-up (our spirit, our internal being) has not been changed from that time four years ago when we last climbed those dunes.  Upon our return, as we stop at the dune and look closely at ourselves, we shall see that, although altered in shape, our character too remains unchanged.  Our lives perhaps have a new form, one no better, nor worse than before:  it is as it is; we are who we are.  And, like the dune, much of our shape is not within our control:  we are shaped by the life forces that touch us, altered by the direction of the wind, the forces of time, and the impacts of others.  Like the dune, we are ever changing, ever moving, always reshaping, yet through all of this our make-up does not change.  The dune is still a grand mass of sand to be admired, to climbed, to be conquered; and we are still…still filled with the same spirit, hope, determination, and fortitude from which great dreams can grow, and from which nothing seems beyond our reach.  Our shape has changed…our lives enriched by the life forces we have encountered, yet here we are…we are!

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Sunday, January 19, 2003 - Happy New Year!

It has been an interesting past few months. James became sick on Halloween day and ended up missing trick--treat. Jessica was a very nice "big sister" and collected candy for James. Anyway, he has been having frequent headaches. The pediatrician determined that he had a sinus infection and treated him for such. Two weeks later James had his long awaited adenoid surgery and ear-tube placement. This was done because he had sustain very long and significant period of significant hearing loss. The surgery went well. All the nurses thought James was very sweet! James was quite a little champ too. He only had one complaint when he woke crying: "I got a wedgie!"

Two days before Thanksgiving James developed a fever of 105. He ended up in ER on Thanksgiving day. There he was given IV antibiotics and IV fluid.  For another 5 days he had fevers of 105 to 106. He was treated with two
weeks of antibiotics and then a CT of his head was done to see if his sinus infection was gone-NOPE! So, he received more antibiotics, which finally ended 2 days after Christmas.

During that same time period, Jessica developed a cough. She'd had been on antibiotics early in November for a sinus infection. Then on 12-09-02 she was started on a 10 day course of Cefzil for an ear infection.  Toward the end of that course, 12-19-02 through 12-21-02, she was seen daily in Pees Endo for her Pamidronate infusions (treatment for the osteoporosis). On the 19th she also was seen by the Pulmonologist because she'd been coughing since late October. The Pulmonologist, Dr. McD, did not like the way Jessica's lungs sounded. So, from pulmonary she was sent for a chest x-ray to rule-out pneumonia. The x-ray showed a partial pulmonary collapse, but no pneumonia. Her PFTs (pulmonary function tests) were pretty bad, so she was started on a 5 day course of Prednisone, along with
Pulmocort 2xs/d., Albuterol inhaler 2 puffs 4xs/d for one week then 3xs/d for one week, then prn. She looked very pale but seemed to feel okay, until 1 AM on 1 AM on Christmas, when she came into our room screaming with ear pain. We gave her some Motrin for the pain, and for the rest of the night she tossed about (our bed) with pain.

On Christmas day she woke at 7:00 AM to open presents. It did not take long before the pain ruined her enjoyment. She stopped opening gifts and laid down on the sofa. James continued to open his gifts, and with Jessica's permission, went on to open those address to both kids. At this time I put a call in to the pediatrician, who directed me to take Jessica to ER. The snow was falling pretty fast, and we had a bit of trouble getting out of the drive. Jessica and I arrived at the ER around 10:30 AM. After the CT report came back, the ER doc received word from Dr. C (Jessica's pediatrician) that Jessica needed to be transferred down to Cleveland Clinic.  Jessica was then parked on a cart in the ER hallway (room #24, the wall read). While we waited for a confirmed bed at The Clinic, Jessica and I watched as more then 10 people came in to be treated for amputations secondary to snow-blower accidents (one benefit of being parked in a hallway). Doug and James braved the blizzard to bring Jessica and me some personal items for the hospital stay. Then at 4:30 PM we all headed to Cleveland. I-71 was pretty slick, and cars were spinning circles in front of us. We were very happy to finally park the car.

After a bit of pleading, Jessica was given a bed on M-33, a unit reserved for younger kids (7 and under). Jessica begged not to go to M-30, the teen unit, because she wanted to be with the nurses she knows on M-33. The floor accommodations made Jessica happy, and I was relieved to have been assigned one of two rooms (out of 18) which has a shower. This made our stay a bit easier. Many doctors, from many different services, came by to examine Jessica. She was started on IV fluids and IV antibiotics. Surgery was done to drain the ear on Thursday, and by Friday we were given the okay to go home, but only if I agreed to call report to the Infectious disease MD, Dr. G, on Saturday morning. I agreed to call her before I headed into work Saturday.

The home care nurse came to show us how to do the home IV antibiotics that Jessica would need for the next tens days. Jessica was very sleepy and a bit fussy. Her temp was okay. After the nurse left she complained of being dizzy and sick to her stomach; she also said that her neck was stiff and that her ear pain was spreading. The word from Dr. G (from ID) was pretty predictable: "Take Jessica back to the hospital...I'll arrange for the admission." My manager found someone to work in my place. Doug arranged for a sitter for James, and back to Cleveland we headed. An urgent CT of her head was ordered early in the day and was finally done by 8 PM. By that time Doug had gone home to relieve the sitter and spend some time with James. Jessica was NPO for surgery the next day because the CT scan showed increasing infection and inflammation in her mastoid. Her head hurt so bad that you could not even touch the hair near her left ear.

The surgery on Sunday brought a great deal of relief to Jessica. All went well over the next 36 hours, so she was discharged home, still on IV antibiotics. Today, Friday 01-03-03, was Jessica last day on the IV antibiotics. Dr. S (filling in for Dr. G from ID) switched Jessica over to oral antibiotics for the next 10 days to 2 weeks. Today I spent much of the day arranging for follow up appts. She will see Peds on Monday, 01-06-03, and ID (Dr. G) on Tuesday 01-07-03.

On Monday the Peds nurse will draw labs from her mediport and then decannulate (as she will have been access for a week). Then on Tuesday the ID doctor will administer vaccines for influenza and pneumoccocus. In 6 weeks more labs will be draw to determine how Jessica's immune system responded to the vaccines, by measuring her  antibodies. This will tell us if her immune system is competent to fight off infections. Presently, her IgG levels are lower than normal, and she may need to get IVIg infusions every 4 weeks again; that would not be good news. At one year off treatment we would expect her to be able to fight off infections as any child who had never been on chemo. Pending are the labs drawn last week to determine if she has adequate immunity to other childhood illnesses for which she was already vaccinated. She will need to be revaccinate if her titers are low.

Many people have told us that they feel very bad for us because another holiday has been spoiled by illness. Yes, this was not the happiest Christmas on record, but we still feel blessed to have all been together.  Three years ago we were still faced with questions about day-to-day survival. These days things are much quieter, a great deal more
predictable, and Jessica is alive! Jessica said to me that this was the worst Christmas that she could remember. I reminded her of Christmas three years ago, when she was too ill to get out of bed and open gifts, or lift
her head, or even care what she received; that extended well beyond Christmas day, and into the new year. That year we were not sure if Jessica would survive her battle against leukemia. This Christmas there was never any doubt in my mind. We are so very blessed to have been granted another Christmas together, to spend precious time with our parents, our brothers, our sisters, aunts, uncles, grandparents, great grand parents, and our friends and neighbors. It is good to remember that there are so many others who were not no able to enjoy these things we often take for granted. I think 2003 will prove to be another wonderful year for us, filled with laughter love, and many surprises (some unwanted and some to be cherished).  We hope you will find much joy, peace, health, happiness, and love in this new year.

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Monday, October 7, 2002 - Jessica has been feeling much better over the past few weeks.  She has returned to playing and running, just not at the same level.  The Pamidronate treatment really makes a difference with the back pain.  The MRI was read by a very experienced Radiologist.  It showed acute and subacute bony changes (interpreted as: new and resolving vertebral fractures), and noted that the over-all height of the vertebral bodies is reduced.  These findings are related to the osteoporosis.  We are relieved that this is not some other type of cancer or tumor.  At this point we are not changing the game plan.  Jessica  can do what she feels up to but should avoid things that increase her risk for fractures.  What this means for Jessica is that really nothing changes, except that soccer is out of the picture indefinitely.  She will still ski when it is not crowded, and can continue to do the things she has done all summer:  roller blade, bike, run, etc... But, she will avoid doing those things that cause back pain.   The Orthopedic surgeon wants a repeat MRI in 3 months December).  Also in December she will have her bone density re-evaluated, and she is to receive her Pamidronate that same month.

Jessica and I, as well as her teachers, are keeping busy trying to figure out how to best help her to learn.  She is struggling in math and continues to have a tough time reading.  These difficulties are due to the brain radiation and the CNS chemo.  She does have an educational plan in place, and we are meeting with the teachers, principal, occupational therapist,
school psychologist next week (after conference) in an attempt to make her plan more specific to her needs.  Wish us luck.  I'm very frustrated with how things are going for her at school.

Well, I'm off to make lunch for James and his friend Emily.  Take care!

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Wednesday, September 11, 2002 - Thanks to each of you for your warm words, thoughts, and prayers.  Jessica's had her bone marrow biopsy done on Monday (9-9-02) and a bone scan done yesterday (9-10-02).  The biopsy had to be sent for further testing because it showed 5% blasts, but the final report showed that there were no signs of leukemia.  This is great news, as it means that she has no evidence of relapse!  I slept much better last night knowing this.  The bone scan did show an abnormality in a thoracic vertebrae, so we are waiting to learn what that is.  The oncologist is trying to get the MRI done sooner, so we can know for sure what we are dealing with.  Until we have all of the results back, we are afraid to let Jessica do too much.  On Saturday she slipped on the wet grass, could not get back up and was having trouble breathing because of the pain in her back and chest.  Not more than 20 minutes later, she was up and about again.   Hopefully we will find a simple answer to this problem.  Next week Jessica will go for her Pamidronate infusion (for osteoporosis), this may bring her added relief.  We will keep you up on what is we learn.

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Friday, September 6, 2002 - Just wanted to update everyone on what is happening around here, without setting off major alarm bells.  Jessica's back pain has gotten worse over the past couple of weeks.  We were quite concerned this weekend when she hurt too badly to get out of bed and had to crawl to the bathroom.  Last week, and even  now, she can not/will not run because of back pain.  On Tuesday she saw the orthopedic surgeon and had x-rays done of her spine and ribs.  Her spinal films showed a wedging of a vertebrae between her shoulder blades and what looks like fractures in left upper ribs (where she had complained of pain).  What the ortho doc could not determine is if these are old or new fractures.   Her bone density on the films looks good, much improved from 2 years ago, so it is puzzling as to why her bones would be fracturing or hurting at this point.   Jessica's oncologist drew labs on Wednesday and they all look pretty decent, although she has had some minor drops in her hgb, hct, and platelets (they are still in the normal range), and her LDH (which they monitor for signs of relapse) is elevated.  The oncologist will do a bone marrow biopsy on Monday, 09-09-02, to look for signs of leukemia,  and the ortho doc has ordered a bone scan to be done on Tuesday,  09-10-02.

Doug and I are concerned about her symptoms and the possibility of relapse, but we are very hopeful that the bone marrow biopsy will normal.  Deep down in my heart I really do not believe that she has relapsed.  I anticipate that we will look toward the bonescan and MRI to give us the answers.  It is frustrating and hurts us deeply to see her in pain and unable to run after being well and without pain for more than a year.

The school is being understanding and proactive in providing at school tutoring for her missed days.  She will miss another 3 this month for the Pamidronate treatment, which I have yet to arrange.

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Wednesday, August 21, 2002 - Summer is coming to an end and the both of the kids are preparing for the start of a new school year.  James will be entering Kindergarten and Jessica is going into grade 3 at the public school.  It is a very exciting time at our home, thinking of all the wonderful things that await our children in this year to come.  It is also a time that brings back memories of 3 years ago (almost) when Jessica was just beginning her first year of school (as is James).  It was during that 4th week of Kindergarten (September 23rd to be exact) when we learned that Jessica had Leukemia.  Oh...what memories we have of these past  three years:  some too horrible to discuss,  others surprisingly wonderful and heartwarming.  Perhaps, now with James making this milestone (Kindergarten),  this means that we have come full-circle;
maybe the worst is behind us.  I have seen so many positive changes in the past few months that I can't but help to think that this will be a great year.

Jessica continues to be healthy and happy, very nervous about what to expect in 3rd grade but also very excited.  She is taking riding lessons every Monday, is passionate about horses.  New for her this year is soccer which she began 2 weeks ago. Jessica is enthusiastic about playing and puts a great deal of effort into each practice.  We still need to get her signed up for dance too.  Recently she has been working with a young artist to create painting for the Make-A-Wish auction this weekend.  It turned out really nice and hopefully Doug can put a copy of it on the web site.

James began soccer this week and will have his first game on Saturday (as will Jess).  I think James is also planning on returning to gymnastics this fall (he has a blast there).  Also, he does have a couple of girl-friends (one of whom he plans on marrying).  He is quite the lady's man.  In private, with the guys, James proclaims to "hate" girls.  Yet, when he is
with the girls he is kind, generous, and always smiling.

I can not believe that this summer went by without an update from us.  This should tell you how much we have enjoyed the summer and also give an idea of how busy we have been.  I'm sure those of you with older kids would advise us that we "ain't seen nothing yet," in the way of being "busy."

Jessica and James had a wonderful summer.  Jessica started her summer with a five week summer school program.  She took one week off to attend  Camp Quality, in Akron, with her brother; it was great fun for both Jessica and James.  The camp offers one-on-one companionship to each child with cancer and to each of his or her siblings.  Our children's companions (Tiffany and Jeremiah)  came in from Kansas City, Missouri.  James' companion, Jeremiah, was wonderful with him.  James spent an entire week at camp without ever needing to call home, that is likely due to the fact that Jeremiah gave James lots of shoulder rides, loads of attention, and did what ever James wanted each day.  On the last night of camp James told Jeremiah that he really wished he could stay longer.  Of course, when we arrived to pick him
up he was very happy to see us and to have his mom's and dad's hugs and kisses again.  This was Jessica's second summer at camp and the second time for her and Tiffany to be together.  They get along so well.  Tiffany is very patient with Jessica and seems to know just what to say to make Jessica smile.  This year all the kids dressed up and went to a "Prom."  The Prom was hosted by a local restaurant and the kids were all transported via a limo bus.  All of the girls dressed in their fanciest dresses and the boys were provided with tuxes and shoe by Commodore Tuxedo.  We are so thankful that this camp exists for our family and the many others that it serves.  It gave Doug and myself an entire week to spend together, alone and without interruption.

We spent an entire day shopping in Amish Country where we bought a couple of things for the kids.  Then we went furniture shopping for Jessica's room, eventually deciding that it would be better to just re-do Jessica's furniture ourselves.  So...I spent the next 3 days sanding, spay painting, and stenciling a bed, dresser, book shelves, and chair.  Guess what?  Did you know that when you spray paint nonstop for 3 days your finger will go numb?  Well...it is true, and 5 weeks later it is still numb.  Doug and I really did have fun while the kids were away.  We ate out each night: never once needed to shop for food, do dishes, vacuum,  or do laundry.  It was quite a treat!

This year we took our first beach vacation in three years (Traverse City:  August, 1999).  We headed east this year to Virginia Beach.  The beaches were clean, quiet, and the water was a warm 82 degrees.  Our hotel, The Cavalier, offered a "kids cafe'" where the kids could eat and watch a movie with other kids and a camp supervisor, while we ate quietly and alone at restaurant on site.  Our kids begged to go each night (really!).  So, as much as we do love our two dear children and hated to leave them (really!), we had to let them go :)  Yippee!!!!!!!!!  This was a really nice trip for all of us!

Summer is winding down this week (well, not really!).  The kids are busier than ever with soccer, friends, a day at the nature center, a trip to the kids museum, a night at Grandma Reese's house, a day a the pool to say good-bye to James' best friend (Kody Kidd), a day at the History Museum with Nana and Papa Rigden, then soccer and a party this weekend, and finally off to school on Monday.  Wow, I am tired just typing it!

Jessica did not need her IVIg last month, and I am thinking that we are done with it!  She is due to receive her  osteoporosis treatment (Pamidronate/Aredia) in September.  And, we are waiting to hear back from the orthopedic doctor to arrange for an evaluation because she has been having more bone and back pain this past month or two (before soccer started).  Hopefully they can determine the cause.  It frightens all of us to see her in pain; sometimes she just screams and doubles over.  Perhaps we will have an answer to that soon.  Otherwise she is doing so very well.  We are expecting this to be a great year, perhaps the best year yet!

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Monday, June 10, 2002 - James had his first trip to ER at the end of May.  He'd developed a sudden high fever that resulted in a seizure, so he was started on a very strong antibiotic for a bad ear infection.  Then a few days later, after feeling much better, James began screaming with headaches and vomiting.  A CT of his head showed a pretty bad sinus infection.  The headaches were probably migraines (they were just like Jessica's).  After some IV fluids, a change in antibiotic (we had to discard what was left of the $109.00 antibiotic), and some rest, he was back to his old self.

James was very sad when he could not go to his preschool graduation because it fell the day after his ER trip.  Doug and I were as sad as he was; we'd waited a long time for that moment.  We took him to Toys-R-Us and basically handed him our credit card; he only hit us up for around $20.00 (nice boy!).  Then we took him to lunch.  In the end, James was happier to have spent the time with us anyway.  And...he even got to go to his preschool teacher's house to receive his diploma and award for being "a great best friend."

Speaking of James and his friends, one just moved to Dallas and his very best friend (Kody) is leaving for Boston some time this summer.  Of course, he has several other good friends, like the one next store.  The little girl next to us is named Catherine.  She is so cute.  James and she have great fun together.  One day Catherine told me (upon discovering James not at home), that when James is gone her "heart just aches," and that when ever she thinks of him she gets a "sparkle in her eye."  She is precious!

James started t-ball 2 weeks ago, and this year he is actually playing.  Perhaps this new confidence comes with age.  This Friday he will turn 5, and is having his birthday party, with preschool friends, at Swings-N-Things.  He is so excited that he keeps reminding even those who were not invited to come to his party :) I did have to limit the size for safety reasons, but it is a bit awkward.  On Saturday he will play t-ball and then we are having some family over to celebrate this great milestone.

Jessica got her very first official report card.  She has made wonderful progress since changing schools, but she has a long way to go in the area of math, spelling, and in expressing her ideas on paper.  So, she will attend a five week summer school.  Hopefully this will help with her transition to third grade.

Jessica is doing very well in her riding lessons, and having a blat.  She never ever stops smiling while on or near her the horse.  The instructor said that Jessica  catches on very quickly.  Jessica has plans to raise/train  horses of her own some day.  She is already asking which colleges have equine programs.  Her other interest is soccer.  We have finally agreed to allow her to play this fall.  The little girl two house over from us is teaching Jessica some soccer skills.  Jessica has made a
couple of new friends since changing schools, and I think the summer of 2002 will prove to be her best summer yet!

Our last monthly trip to the oncologist was a couple of weeks ago.  Actually, she was there two weeks in a row.  The first time for a routine visit, and the second time because she had spiked a fever of 104 during the night.  Her labs showed that she was fighting off a virus, from which she has recovered very quickly.  She looks so well, has a great deal of energy most of the time, and has grown an inch since January.  Her leukemia remains in remission and ever day that goes by allows us to believe (hope)  still more that this will always be the case.

This week she has to go to the clinic  3 days in a row for her Pamidronate (Aredia) infusions.  This is the drug that she receives to treat her osteoporosis.  I am crossing my fingers that she will be well this weekend.  So far she has been sick after every infusion (beginning on day 4).  James and Jessica get pretty restless at these visits.  The room is small and dull, but today they were excited to see the Peregrine Falcons (or a least one of the mating pair) that nests there on the clinic building.

Doug and I have been busy with yard work (this we both love), work, and just keeping up with the kids.  We are looking forward to attending our 20 year class reunion this July.  Also, in August we will be taking a beach vacation with the kids.  Life, although no less dull, has become a bit more predictable and we are enjoying the our days with fewer "urgent" events.

Our best to each of you.  I am off to bed.

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Sunday, April 21, 2002 - It's quiet around here, for a change.  Jessica is off with Doug at a father-daughter dance with the Indian Princesses, and James is staying with his Grandpa and Grandma Reese this weekend (THANKS!).  So,  I thought I would take advantage of this moment and update the web page.

Jessica never fails to amaze me.  She has had another great change in her life and is just adjusting wonderfully.  Two weeks ago Jessica began attending school at the local elementary.  It was a very difficult decision for Doug and myself, choosing to remove her from her small independent school, where she was/is so well like and cared for, in order to provider her with the educational accommodations that could not be provided by the private school.  We thought long and hard, researched our options, and included Jessica in the process as much as possible.  She had fallen further behind in math, is having difficulty in processing auditory information, sequencing, planning/organization, and difficulty with some aspects of her memory (while other portions are amazing), as well as trouble focusing attention.  We hired a tutor back in November to assist her with learning to read and spell.  Since then she has made remarkable gains, but it has required that she work for about an hour per day at home, this after a very long day of school.  She would leave for school at 7:30 AM and return home at 4:45 PM.  There was never any time for her to be just a kid.  In fact, all of her homework occurred over the weekend.  And, with me working almost every weekend, I really felt  like I was not able to enjoy family time with
Jessica.  After the results of her educational  testing, and the recommendations that followed, we felt Jessica would benefit more (in the long run) if we changed schools now.  So, that is what we have done.  What a difference it has made already.

Jessica tells us that she is less stressed at this new school, no longer pulling out her eyelashes because of stress (yes, she now has bald spot).  The teacher, Mrs. P, says that Jessica is catching on quickly and keeping up with her classmates, thanks to some minor accommodations.  She made new friends the first day, and even has a play date this Thursday.  This coming Tuesday we will meet with a team of people from the school to work-out the final details of her educational planned (based on her educational assessments and teacher observations).  I'm very hopefully that Jessica can learn to work around some of the injury that has occurred to her brain from the radiation and chemo.  My main objective is for her to be happy and well adjusted, so far this is the case, but it will require the help of those who will touch her life at school.

Well, the quietness is over, Jessica has come home sick from the dance (with fever).

I did want to share with you that Jessica did begin her riding lessons, weekly on Tuesdays, and she is having a great time.  Every 4th Monday she will also be attending 4-H horse club.  The first meeting was snowed-out, and it looks like the next meeting (tomorrow) she may miss due to illness :(  Dance is going wonderfully.  She will be in the dance school's recital this June.  Her back seems to be holding up to this activity with just mild pain.

As for the rest of her health.  Since changing schools she has had SO much more energy.  Also, her last labs showed that she is has crept into the low normal range for her IgG.  This is good news because she may soon not require her monthly infusions (as long as she maintains a normal level).  She will see the oncologist on this Tuesday, after the school meeting.
Hopefully she will be well by then.  Cross your fingers.

Now, for James.  He is still his fun little self.  James really enjoys his gymnastics class, and he is getting all ready to start t-ball in May (we shall see if he'll actually play this year).   James is signed up for Kindergarten in the fall, which I am still having a difficult time believing.  How could he already be old enough!

Both of the kids have been signed up for Camp Quality this summer.  Each will have his/her own companion.  Jessica will have the same companion from last summer (Tiffany).   Tiffany is wonderful.  She has done an excellent job of keeping in tough with Jessica this past year.  She lives in Missouri, and we are hoping that she will be able to stay a short time with us after camp.  The camp runs for 6 days in July.  What ever will Doug and I do with six days without the kids?  What would you do?

Well, Jessica is very fussy and crying for me.  So, off I go!
 

ta ta.

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Wednesday, March 13, 2002 - James wanted to show-off his new "Bob the Builder" clothing and his new haircut - from Lisa H. 

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