History

Journal History

Monday, March 10, 2003 9:28 PM CST

Last Thursday, March 6th, marked the end of Carter’s 130 weeks of treatment. In the office Carter had a bone marrow aspiration and a spinal tap, analysis of both tests detected no abnormal cells. This means that Carter’s treatment is considered successfully completed. The Doctors explained that there is a very high likelihood that Carter will be completely cured.
For Carter the biggest change will be that he no longer has to wake up to take chemo every night, and his occasional nausea will stop. Over the next six months Carter’s immune system and blood counts will recover. During that time he will continue to take an antibiotic to prevent pneumonia. In six months he will get tested for his infant immunizations. There is a good chance that he will have to be immunized again.
We are all getting ready for our Make-a-Wish trip to Disney World next week. It will be a great way to celebrate Carter’s end of treatment.
We would like to thank everyone who has helped us through this ordeal. We will never be able to thank you all, but please know that you are all in our prayers.

Jim

Friday, February 28, 2003 8:33 PM CST

Hello Friends & Family. Again I have waited a while to update Carter's page. Fortunetly, it seems, there has not been a whole lot to write about. Over the past few months we have enjoyed Thanksgiving, Christmas, New Years and lot of SNOW. I have added some new pictures to the page to bring in a winter feel.
Carter, MacKenzie and Ronan had a great Holiday season. Their Gran and Aunt Libby visited for Thanksgiving, and we had a fun time. Their Uncle Billy came to visit for the month of December, and it was great to have more family around the house for Christmas.
We enjoyed a Washington Wizards Basketball game care of Special Love. The Wizards may have played one of their worst games of the season (not that the kids noticed), but we all were able to see Michael Jordan play. MacKenzie, Carter, Uncle Billy and I were able to attend the Washington Redskins - Houston Texans football game (see the picture) as well. That was a lot of fun and the kids really got into the game.
In January and February we have been quite distracted by snow. This has been the coldest winter in our eight plus years in Virginia. This month we have had almost 35 inches of snow. Compared to the 10 inches or so for all of last winter that is a lot. The shoveling reminds me a little of my youth in Buffalo.
Over President's Day weekend we attended Special Love's Annual Ski Weekend. On Valentines Day we drove to the Canaan Valley a resort in West Virginia. As we arrived there at about 7PM the snow was just starting to fall. I always laugh and explain that they are not. That weekend we experiencied a real life blizzard.
Over the three days Canaan Valley received over three feet of snow, to add to the couple of feet they had when we arrived. The whole trip was quite fun, but the blowing snow made skiing a real challenge. MacKenzie and Mary Chris were able to ski Saturday. Sunday we tried to get Carter a lesson, but the conditions were sooooo cold that we collectively gave up. Just getting across the resort's parking lot in the blowing snow was a considerable challenge. The weekend was a lot of fun anyway. MacKenzie and Carter were reunited with friends from previous get togethers and the parents even got a few hours off care of the Special Love staff. They were great!
The ride home was another story. We departed around 1PM on Monday and it took seven and a half hours to make the trip that had taken four hours three days earlier. We arrived home to two plus feet of snow in the driveway. Needless to say, we spent the next day digging out. The kids have enjoyed the snow immensely. They have been sledding, building forts and throwing snowballs at their parents.
We are really looking forward to the nonth of March. Carter is currently in the one hundred and thirtieth week of his treatment regimen. That just so happens to be the LAST WEEK!!! He is scheduled for a spinal tap and bone marrow aspiration this Thursday. As long as they are clear we are finished with Chemo. Carter has spent half of his life in cancer treatment, and we are all ready to move on. As if that was not enough Ronan's third birthday is on the tenth, and MacKenzie's eighth is the twenty-fifth. We are also scheduled to go to Walt Disney World for Carter's Make-a-Wish in a few weeks. We are all getting quite excited about the trip.
I will update the site later in the month to fill in the details of these exciting event.

Thank You All for your Love and Prayers

Jim

Thursday, October 24, 2002 at 08:47 PM (CDT)

This week has been a good week for Carter and all the Beardsleys. Carter’s White Blood ANC returned to normal after dropping last week, making him neutropenic. That meant that he we had to keep him from being exposed to disease as much as possible because his immunity was partially compromised. Much like the drop he experienced last summer in San Diego this drop was two weeks after a spinal tap & IV chemo treatment. Happily he only dropped to 350 vice the 46 he reached in late July. This week is back up to 900.
The second piece of good news is that it appears that the Washington DC Metro Area Law Enforcement Officers have caught the sniper than has been terrorizing us for three weeks. Carter’s pre-school class has not been allowed outside to play, he has had two field trips cancelled, and both Carter & MacKenzie have missed Soccer practice & games. We hope that all will return to some sort of normality.
Finally, Carter reached a real milestone today. As I noted in the September journal entry, Carter started Tae Kwan Do in August. He as been training as a “No Belt” for two months. In that time he has gone from running off the floor during stretching because he was too tight, to mastering the 6 basic kicks and punches. He was awarded his White Belt today after completing a test with his Master. The test included Carter performing a memorized routine and demonstrating the basic moves. Mary Chris and I were almost overwhelmed with pride to see him out on the floor demonstrating his ability. He seems so small, but has gained an impressive mix of balance and physical discipline. Carter is younger than the average child in his class and is not the most physically gifted, but his ability to listen and concentrate on his instruction has been wonderful to watch. We originally hoped that Tae Kwan Do would provide Carter discipline and some socialization, but as usual he has surprised us with his understanding and determination.
At home Carter has been growing a good bit as well. He has been showing interest in reading and started to learn a little math. The really neat thing about his learning is that it is completely on his own terms. We have never asked him if he wanted to learn to read. The other day Carter told us that he "wants to learn to read when he turns 5 (in December) because he can not wait for Mary Chris to read all of the books in the Magic Tree House series.”
As the Fall progresses here and the weather gets colder we will once again become wary of Flu and Cold season. Hopefully Carter will continue to be the “healthy” one in the family. There are a couple of new pictures on the site. One is a picture of Carter and hit new White Belt.

Jim

Wednesday, September 04, 2002 at 09:24 PM (CDT)

It has been way too long between updates to Carter’s Page and I apologize to anyone who has checked routinely. The past nine months have been pretty good for Carter and all of us. It has by no means been uneventful though. The Winter and Spring were as usual the most delicate for a family with a child that is potentially immuno-suppressed. Carter made it through as the “most healthy” member of the family for the second winter in a row. He did have the sniffles a couple of times, but they never materialized into anything of significant concern.

On the treatment front January 2002 was a significant month for Carter. We started the month in the 69th week of his treatment. It is hard to believe that we had been living with this experience that long. January marked the end of Carter’s divided dose Methotrexate treatments. Those treatments required Carter to take 28 pills every other Wednesday and two doses of the recovery drug the following Friday. Carter handled the treatments quite well, but experienced regular nausea in the days that followed the treatments. At the end of January Carter experienced a bout of diarrhea along with a low point in his Red Blood counts. After a week of these conditions Carter had an anti-body and red blood cell transfusion. This was Carter’s first blood transfusion in about a year. He recovered nicely in February.

Carter started the final phase of his chemotherapy in February. Now he takes five and a half pills some time on Thursday each week. Over the past few months the instances of Carter’s morning nausea have decreased from weekly to monthly or less. At this point as long as he eats a decent dinner and does not wait too long for breakfast he is fine. In mid February Mary Chris traveled to New Orleans to walk the Mardi Gras Half-Marathon as a part of the Leukemia-Lymphoma Society’s Team-In-Training. She raised over four thousand dollars for the society and thoroughly enjoyed the experience. The remainder of the Winter and early Spring were uneventful.

In the Spring Carter, Carter played his second season of Under Four Soccer. He really enjoyed that again and has become quite proficient. Through The Children’s Promise Foundation we made plans to spend the second week of June at Ocean City Maryland. Unfortunately the week prior to little vacation Carter’s White Blood counts dropped and we had to decline the trip. His counts returned the following week which was good because we devoted the remainder of June planning for a mid summer trip to San Diego. We were able to fit in a New York Yankees-Baltimore Orioles Game in late June, and although the Yanks lost we all had fun.

The trip to San Diego was quite an extravaganza. Carter’s Uncle Steve Fox was married the last weekend of June and his Aunt Louise Law was married the first weekend in August. Carter and his sister were ring bearer and flower girl, respectfully, in each wedding. In order to prevent two cross country plane trip in three months Carter, his brother, sister and Mother stayed in San Diego with their Grandparents for six weeks. There is a picture of Carter dancing with his newly married Aunt Louise in the page’s photo album and we hope to have more wedding pictures in the near future.

As always, traveling to San Diego was quite an adventure. Our flight was cancelled due to weather and we had to fly on the day of the first wedding rehearsal. We left Washington at 6:30 AM with two adults, three kids ten checked bags, four acrry-on bags, three car seats and a stroller. Moving the Sixth Fleet might have been easier. We arrived in San Diego late in the morning and after stopping at the Fox home to drop off some bags we drove up to the Los Angeles area for the wedding. Carter never napped and was a complete zombie by the time we arrived at the wedding rehearsal. He had been up for seventeen hour straight. He was able to bounce back the next day and was without a doubt the most handsome ring bearer every (as far as we were concerned).

The month of July was a mix of playing with Uncles Billy & Greg, visits with Aunt Louise, and a week in at Camp Reach for the Sky, a camp for families of ancer kids. There were also trips to Disneyland, Legoland, the Beach, the Pool, the Zoo and the San Diego Wild Animal Park (a family favorite). In Late July Carter’s White Blood counts droped significantly and we had to stop chemotherapy for almost two weeks. A normal ANC is 2,000-10,000. Carter’s treatment average has been around 1,000-1,500 (the target for his protocol). On the 2nd of August Carter’s ANC was 46. This was 4 days before we were schedule to fly home, and the doctors said he could not fly below 500. Needless to say we were all a little on edge.

Happily Aunt Louise’s wedding and reception two day later were outside and Carter was able to participate. His counts would have forced us to keep him away from large crowds indoors. The wedding was great, and his counts on August 5th were 551, so we all returned home safe and sound.

August has been a busy month, along with getting settled back at home Carter started Tae Kwan Do lessons. Carter has been growing very emotional and has been prone to violent outbursts, not too surprising considering all he has been through. After talking to some parents we decided to try some physical and emotional discipline. Although his robes are a little big, he has really taken to the lessons, and is learning more and more each week. Carter is also starting Soccer again this month along with Pre-School. He will be playing “real” soccer games along with a weekday practice this season. All these activities will likely be quite taxing on him. We will be keeping a special eye on his health and energy level. We are a little concerned about him overdoing it, but after two years he really wants to get out of the house.

The biggest event in our lives this month is the second anniversary of Carter’s diagnosis. He was initially diagnosed on September 3rd 2000. It was the Sunday of Labor Day weekend. This year we had a quiet wonderful Labor Day holiday; including dropping off a big bag of cookies for the staff of the Pediatric Oncology Ward at Fairfax Hospital. We are once again reminder how lucky we are to have Carter, his brother and sister. It is amazing how far we have come in the past two years. When I look back on the initial entry in this Journal, written from Carter’s hospital room two years ago we had no clue as to what the future held. His course of treatment was almost incomprehensible. Now we are six months from its scheduled completion.

We want to thank everyone who checks this site and thinks about Carter. We appreciate all you thoughts and prayers, and will attempt to update the site more often.

God Bless,
Jim

Monday, December 24, 2001 at 12:05 PM (CST)

Happy Holidays to all of our friends and family! When I last updated Carter’s page three months ago we had little idea how much all of our lives have changed. Thankfully Carter’s life has remained unaffected for the most part by the events in the world at large.

Carter’s treatment progressed a planned through September and most of November. In late November Carter’s White Blood count came up with an unexpected drop during a routine re-treatment blood test. Although Carter has experienced a slight fever the previous week, there was not obvious reason for the drop. We stopped his treatment and he had a bone marrow aspiration the following morning. This was Carter’s first bone marrow test in 7 months. The bone marrow did not indicate any change in Carter’s remission. Thankfully!

In addition to the bone marrow test Carter had a considerable amount of blood draw for a battery of tests. The goal of the effort was to identify any infection that might have caused the white blood count drop. The doctors prescribed four days of injected medication to boost the white blood count. To date all of the tests have come back negative for infection.

Carter’s white blood count has returned to normal levels over the past couple of weeks. We resumed chemotherapy after a week delay. Today is the second dose of chemo and he appears to be taking it well.

Having an anomaly in treatment is usally common for Leukemia patients. We have been lucky to have gone through over a year of treatment without stopping to wait for the blood counts to stabilize. We only have three more of the bi-weekly treatment in the current phase of the treatment. In February the chemo treatments change to a single dose weekly. The overall dosage will be notably reduced.

Carter has had a few minor reactions to his chemo this fall as well. A couple of times he has had mouth sore appear during and after treatments. These were actually expected and passed in a day or so. Carter has also developed a rash on his face that breaks out around the treatments. The rash initially appeared on the left corner of his mouth. Over time is spread around the bottom of his month and now can be seen all over the front of his face. Most of the time the rash is very subtle. The Oncologists have said that the level of the chemo will build up during the course of the treatment, and the appearance of side effects is common. Fortunately Carter appears to be oblivious to all of the issues. He continues to be an irational trooper.

This Fall Carter started Soccer with a local club. He was on a co-ed team that met Saturdays for a 1-hour beginner practice and short game. He really enjoyed the experience and loves to plays soccer with MacKenzie.

He was so excited in September when he received his own soccer ball, cleats and shin guards. The whole team was really adorable.

Our big news this month was Carter’s Fourth Birthday on December 5th. He definitely understands the concept of the “Birthday” now. Carter actually had a Birthday Week. The day before his actual Birthday we had a cake for the neighborhood kids. On Carter’s actual Birthday he opened a few presents, but refused to acknowledge the actual day. He had his mind set on the party the following weekend. We tried to explain that the actual Birthday was the 5th, but he would have none of it. On the 9th of December we had Carter’s first real Birthday Party. 8 boys and girls came over to play duck duck goose; break a piñata and have cake. The weather was great and the kids were able to play outside for a while after the festivities.

Another piece of news in our family is that Mary Chris is training to walk in the New Orleans “Marti Gras” Marathon in February. She is training with the Leukemia & Lymphoma Society’s “Team-In-Training.”

Team-In-Training is an organized group that arranges coaches and travel for the participants in a number of marathon events all year round. The participants have to raise a certain amount for the society, and the travel arrangements are covered as part of the effort. Mary Chis’ goal is $3400 and she is well on her way. She trains a couple of days a week (when Carter & Ronan will let her) and participates in organized team walks on Saturday mornings. We are all very proud of her and look forward to the big race. If you are interested in helping Mary Chis reach her goal please send an eMail to the address below and we will for on more information.

Carter continues to mature. He amazes is every day with his cognitive ability and yearn to learn. He has started to learn a little math and is expressing interest in reading and writing. This is not too surprising as MacKenzie is learning both in First Grade. We continue to be concerned about potential learning delays or other affects from the chemo, but there is little we can to. We thank you all for you thoughts and prayers.

God Bless and Happy New Year!
Jim

Sunday, September 02, 2001 at 09:55 PM (CDT)

It is hard for us to believe, but today is the one-year anniversary of Carter's initial diagnosis. I guess Labor Day Weekend will always carry a stigma. We have been having a great weekend. The weather here in Northern VA has been great. Carter continues to progress with his treatments. His blood counts remain in the middle of the expected range, and we continue to have bi-weekly chemo treatments. Last week we had to increase the dosage slightly because Carter's weigh has risen over the past couple of months. I guess that is a good thing.
Carter continues to he a normal three year old. He is obstinate and moody at times as he feels his way through a growing sense of self. This challenges us in a number of ways. We have to keep reminding ourselves that much of his behavior is that of a normal three year old, and that he needs the same structure and guiding hand that they all do. Whenever he refuses to eat or says he feels “sick/tired” (vice cleaning up) we always have a question in the back of our minds whether it is the illness/medication or just Carter.
As for the summer Carter has really enjoyed himself. He has become quite an amazing swimmer. A year ago he had trouble putting his head under the water. Now he swims and glides effortless 15 to 20 feet all over the pool. He did take a swimming lesson in the spring, but we had no idea he would come so far this summer. He started jumping off the diving board a few weeks ago with one of us in the water to help guide him to the ladder. This afternoon, he was jumping off the board and was able to swim across the deep end of the pool to the ladder all by himself. He is remarkably buoyant and glides really well with a few kicks.
Carter is going to be playing soccer this fall in an under 4 program. He really took to soccer after MacKenzie started last Spring. This is the first time the local league has offered an under 4 program. He was really excited to get his own soccer ball, cleats and shin guards. We have a set of small goals for the yard, and I expect that both Carter & MacKenzie will be out kicking the ball around more and more as the Fall wears on.
This weekend has been quite emotional for Mary Chris and I. It is amazing to think that we received “the call” from our pediatrician one year ago this morning. When we all went to church this morning, as we did last year, and were moved by the memory. We are going to visit the Oncology-Hematology Ward at the hospital tomorrow to bring cookies to the staff. Without them I do not know what we would have done that first week. It is incredible to think that this site has had just short of 4000 visitors in a year. We can never thank everyone for the outpouring of love and support we received over the past year, but please know that we appreciate very single thought and prayer. I hope a year from now I can write that the second year of treatment was better than the first, and that the future continues to look bright.

Jim

We have update the Phtot Album with some pictures from the summer.

Tuesday, August 14, 2001 at 10:07 PM (CDT)

Friday, July 20, 2001 at 11:01 PM (CDT)

The months of June and July have been good for Carter and our family. He has become very comfortable with his "Port" and has been getting into the summer. Carter has really taken to the water this summer. Last year he did not want to put his face in the water, and now he is ready to swim. With assistance from Mary Chis and I he will dive down to the bottom of the pool and "swim" back to the surface. He has started swimming lessons and should be well on the way to water autonomy. He really loves the pool.
We also had a visit with Mary Chris’ brother Greg. Greg stayed for four days and had a great time with the kids. They picked up right where they left off in San Diego and everyone enjoyed the stay.
Carter has had a little more trouble with his bi-weekly chemo treatments. Two weeks ago Carter has a short bout of nausea, he threw up three out of four times after taking his chemo but we conned him into taking some anti-nausea medication and he got through it. He has shown no impacts to from our bout with the incorrect medication in May. We are definitely looking closely at all of our prescription medication now.
Last weekend we held a Yard Sale to raise $$ for the Leukemia and Lymphoma Society. Our friends and neighbors donated items and were able to raise $750. This was a great experience and we really appreciate all the support we received. We are donating $50 to Growing Hope, the charity Carter's doctor's office that buys gifts and toy for the kids. We are going to donate $100 to a charitable fund supporting the family of a child at Carter's doctor's office who passed away early this month.
The remaining $600 will be donated to the Leukemia and Lymphoma Society's Light the Night cancer awareness effort. Light the Night is a fundraiser that the Leukemia Society holds each September (for more information check the Light the Night Web site below). We will actually be holding illuminated balloons; it is a two-mile walk. We are part of a team at Carter’s doctors office called Dr. Greenberg’s Gold Ribbon Kids. We hope to raise another 150.00 dollars so each member of our family will be able to contribute 150.00.
September is Childhood Cancer Awareness Month. An organization called Candlelighters is sponsoring a seminar on lobbying to Congress for more funding for childhood cancer. On September 15 there will be a Candlelit Vigil on the Eipse. We hope to take part in many of those events.
We continue to be both amazed and inspired by Carter. He is growing into quite a little man. To him the Chemotherapy and doctor's office visits are part of life. Some days it is a challenge to remember that he is just a three year old and needs to be treated as such. Ronan and MacKenzie help to remind us that they all need special treatment some of the time.

We hope all of our friends and family all over the country are having a great summer.

Jim & Mary Chris

Saturday, June 16, 2001 at 10:46 PM (CDT)

It has been a big week for Carter. After two weeks without his catheter, Carter had a “Medi-port” placed in his chest on Thursday. The surgery took about an hour, but the overall time including recovery was almost three hours. The surgery again reminded us how much more personal Carter’s out patient treatments are at the Oncologist’s office. We were not been able to see Carter until he woke up form the anesthesia. In the Oncologist’s office we are in the room throughout his Spinal Tap and Bone Marrow procedures, and we remain with him as the anesthesia wears off. We have been pleased with the treatment we received at INOVA Fairfax Hospital, but the wait during surgery is uncomfortable. Hopefully that will be the last surgical procedure for a few years.

Carter came through the experience extremely well. The surgery left an incision, with a couple of sutures on his right shoulder and a incision next to the port almost under his arm on the right side. The port can pretty clearly be seen, it is a small lump on the side of his chest. Thursday night was a little uncomfortable for Carter. I think the combination of the two incisions and the lingering effects of the anesthesia were taking their toll. Carter refused to take any Tylenol for the pain. He never will when he is in a bad mood. After a few Little Bear videos he finally fell asleep and slept through the night.

We were very pleased to hear that the waiting period for Carter to swim and engage in normal “kid” activity is relatively short. He will be able to take a shower Sunday, and will hopefully be able to get back into the pool early next week. He has been doing really well in the pool so far this season; he loves to put his head in the water. We hope he will be swimming (at least a little) by the end of the summer.

We are pleased in general with Carter’s progress. The staph infection that drove us to remove his catheter over Memorial Day weekend appears to have cleared up. Carter’s blood counts have remained strong, and we have no reason to believe that will change. We now have about three months in the current treatment regime, and he has hopefully established a pattern. We can now say that we have less than two years of treatment still to go.

Mary Chris’ mom, Marci, her cousin Diane and mom’s friend walked the San Diego Rock and Roll marathon on June 3 for the Leukemia and Lymphoma Society. Carter was one of their honored teammates. Carter is also an honored teammate for our friends Terry and Bob Jordan who are running the Dublin marathon in the fall. We are so grateful to them for raising the awareness of Leukemia & Lymphoma and to all of you who gave them contributions to meet their fundraising goals. Thank you.

We hope everyone has a good summer. We appreciate your thoughts and prayers and we keep you in ours.

Tuesday, May 29, 2001 at 09:08 PM (CDT)

Just a quick follow up to the long note I posted on Sunday.

Carter returned home about 1200 Tuesday. He is in good spirits and looks great. His Central Line Catheter was removed on Monday morning to eliminate a potential location for a "Staph" infection he has. To Date Carter has not exhibited any symptons of the infection.

We had great treatment while in the hospital. The new Pediatric Oncology/Hematology Ward at Fairfax Hospital is wonderful. The staff was great and we were lucky enough to have Carter's favorite Nurse, 'Barb', both nights.

Carter is scheduled to have a "porta-cath" put into his chest in mid June. If all goes well and the Stapf infection clears we will continue with that plan. Now that the old catheter is gone we no longer have to do the twice a day flush or change the dressing. We are all happy about that. In addition with no catheter there are no restriction on time swimming or playing in the pool. an hour a day would have put quite a damper on the summer.

We really appreciate all the kind words and prayers we have recieved this week.

Jim

Monday, May 28, 2001 at 12:38 AM (CDT)

Late Addition:
[I started this journal entry early last week, but was held up finishing it until tonight. The following note covers the last day, and the remainder of the journal starts back in March and catches up to today. We have had an exciting weekend. Carter and I are back in Fairfax INOVA Hospital for a couple of days. Carter has a “staph” infection and he will be having his central line catheter removed tomorrow (Monday) morning. The best way to attack the infection is with IV antibiotics. He will have a dose tonight and will continue hydration through the morning to prepare for the surgical procedure. He has to fast starting at midnight tonight. I will update the journal tomorrow night.]
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This journal has not been updated in a while. Please find a comfortable seat, get a cold drink and relax.

The fact that we have not been updating the journal is actually a good thing. Over the last two months Carter’s health has been quite good. We have become accustomed to the Bi-Weekly chemotherapy treatments, and have reduced doctor’s office visits to the same weeks. The treatments consist of 4 (6-7 pill) doses of chemo at 1400 & 2000 Wednesdays and 0200 and 0800 Thursdays. For the most part Carter takes the pills well. He can chew them up. That treatment is followed by two doses of Leucovorin (vitamin B complex) on Friday afternoon and Saturday morning. The Leucovorin is a recovery medication that helps the body remove the Chemo from the blood.

We have had quite a busy time over the last two months. Hopefully the first few weeks of summer will move at a slower pace. Late March and early April were relatively quiet. We established a routine, and prepared for our Easter trip to San Diego to visit Mary Chris’ family. On the Wednesday before Easter my sister, Libby, gave us a ride to the Baltimore-Washington Airport. Mary Chris’ parents Bill & Marci gave us the plane ride as a gift, and we were able to find reasonably priced flights out of BWI. We arrived at BWI with three kids, six checked bags, three carry-ons, three car seats and a double stroller. Needless to say we were quite a sight. We managed to get all nine pieces of luggage checked, and on the plane with little incident.

Our first leg was BWI to Chicago. We had three seats on one side of the plane and the first seat across the isle which worked out fine. Shortly after we boarded the plane there was some commotion behind us. It turned out to be a family with a couple of kids who had CHICKEN POX. Mary Chris had noticed them when they boarded plane and was going to ask the next flight attendant that passed, but the staff caught the issue. The family had to exit the plane, and I moved Carter to the window seat as they passed. In reality it was a pretty close call. If Carter were to get the chicken pox, he would likely have to be hospitalized.

We were held on the ground due to congestion in Chicago and departed late. This worried me because we only had a 50-minute layover in Chicago. When we arrived there was almost no time to make our connection, but the pilot announced that there was a considerable disruption in the scheduling in Chicago, and many flights were delayed. Apparently there was a severe blizzard in Denver and the planes making up many of the United flights out of Chicago were stuck in the snow. When we deplaned (3 bags, 3 kids, 2 parents and a stroller) I was surprised that there was not attendant waiting to direct the passengers. There was however a line of over 100 people waiting for customer service, and the flight status screens noted that our Chicago to San Diego flight was cancelled.

After we jumped into the growing line a United Airlines employee informed us that the 2 later flights to San Diego were booked, and we should call for a hotel room referral. We could not believe that. It was only 1030. We were not ready to give up. As we progressed though the line it was clear that United was not going to help. I called our travel agent and she stated that there were American Airlines flights with seats available. When we reached the United agent we received vouchers for the tickets. I called and reserved seats on an American flight through LA. The catch was that we had less than an hour before the flight left.

The American gate was 6 terminals away (about as far as you could get at OHare). We ran the entire way and were quite a site arriving at the American gate bags, stroller, kids and all. American treated us very well. They re-arranged the seats to get us three together and one across the isle. The flight was long and the plane change in LA a hassle, but we finally arrived in San Diego at 8PM. Mary Chris’ parents, Bill & Marci and brother Greg met us at the airport. We were all dazed, but happy.

On our second day in San Diego we went to the San Diego Zoo’s Wild Animal Park. That was quite an experience. We had quite an entourage. Bill, Marci, Uncles Billy & Greg accompanied the five of us. The kids really loved the open range enclosures and the wide variety of animals. Carter has developed an intense interest in animals of all kinds and he was entranced by all the sights.

On the Saturday before Easter we met my cousin Matthew Widelski. He is serving as the Communicator on the USS MT VERNON, a Navy cruiser stationed in San Diego. Matthew gave us all a tour of his ship. It was a lot of fun. Carter enjoyed seeing the ship. I t was a little difficult for him to comprehend the totality of the ship, but he did sit in the Captain’s chair on the bridge, and pretend to steer as well as look at the “big gun.”

On Easter Bill & Marci has a large number of family members and friends. The kids were able to spend time with their Great Great Grandparents Fox and Great Great Grand “Oma.” It was really nice of Mary Chris’ cousin Laynie for bringing Oma down from LA to see us. That was a precious opportunity for all of us. We were also able to see all of Mary Chris’ brothers & sister as well and a number of other friends

The day after Easter we all went to Sea World. Through the generosity of a couple of friends were we able to use visitor passes and avoid the exorbitant cost of visiting the park. The kids really loved Sea World. We arrived early and were able to go through
SeaWorld’s Arctic exhibit without waiting in line. The Kids really loved polar bears and seals, but the Beluga whales were a real favorite. Carter was entranced, watching the big white whales inches beyond the glass of the window into their tank. We saw penguins, dolphins, seals, sharks and of course the Shamu show. A great time was had by all.

On our last day in San Diego we visited the Zoo. It was a great day as well. That night we had a nice dinner with the Fox’s. A Greta trip was had by all. The kids are still talking about going back to San Diego and seeing their Grandparents, Aunt and Uncles. Our trip home was no where as exciting as the trip West. We arrived back in Baltimore at 10PM and Aunt Libby was there to pick us up.

On 9 May Carter had a Spinal Tap, a Vincristine (Chemo) shot and started a week of Dexamethazone (a Steroid). This was the first Tap and additional treatment in over 12 weeks. Carter handled the situation quite well. He did have some appetite adjustment during the week, but did not gain too much weight. The following week the Oncologist reported that the Blood and Spinal fluid continued to have no detectable leukemia. That is 31 weeks in remission!

The weekend after the Tap we attended a family camp for families of children under seven with cancer. The camp is run by Special Love a charity supporting children with cancer run out of the National Institute of Health. The Camp was held at the Northern Virginia 4-H Center in Front Royal, VA. It is right at the entry to “Skyline Drive” and the Shenandoah National Park. There were about a dozen families from all over VA, MD and PA. We stayed in a building with individual rooms much like an austere motel. We had a bunk bed for MacKenzie and Carter, and two single beds. We drove out after MacKenzie’s soccer practice Friday evening. After arriving we met for a camp fire to meet the other families and sing songs.

The next morning we were up early for breakfast and a brief family meeting. For the remainder of the morning session the kids were broken up by age. Carter couldn’t wait for his age group to be called. Ronan even had a little individual attention (he was the only 1 year old). The parents spent most of the morning in a group discussion on family and couple dynamics while dealing with childhood cancer. It was very interesting to talk to families being treated in other facilities and systems. We were pleased to see that Carter is receiving first class treatment. The parents finished the morning by taking on a few obstacles in a confidence course. It was a lot of fun.

After lunch we had an hour or so of rest the families drove into Front Royal to a huge play ground. The kids really enjoyed the playground. We returned miniature pony’s for rides and a cookout. Following the cookout there was a camp fire where we had songs and s’mores. After that we returned to our rooms and the kids changed into the pajamas. The staff then “rounded up” all the kids for a movie and the parents were split up. The fathers watched a taped basketball game and played poker, and the mothers celebrated Mothers Day with a mini-spa. The staff arranged messages and manicures for the Moms. It was quite a surprise all around.

The next morning we had breakfast and a time for prayers and songs, and departed around 1000. The whole weekend was really great. It gave us all some time to decompress. The camp staff did a nice job giving the parents and kids alike time on their own. Carter flourished in the environment. Half way through the weekend he was well know to all of the staff. His outgoing nature and happy spirit provided a source of energy for many.

One unfortunate part of the weekend was Carter’s reaction to his medication. Even though he was on the steroid, he put up a severe resistance to his nightly “6MP” chemo pill. We had been giving him the same pill every night for 9 months, but the first Friday night at the camp he violently threw up when I gave him the pill. Later in the night Mary Chris and I were able force him to take the pill, but it was a battle. Saturday night it was again a battle. We were rather upset by the experience Carter will be taking this same medication for the next two and a half years, and a nightly battle over that period would do us all in.

Sunday night Carter was again able to take his nightly chemo with no problem, so we put of worrying about it. The following Thursday Carter went to bed late and I gave him his pill down stairs rather than in his room. He spit the pill back at me. Mary Chris asked what bottle I had taken the pill from, and we realized that the only time we had used that bottle was that night and at the camp. When we checked the medication in Carter’s room with the bottle the pills were different. The two bottles were in fact from a single prescription, but the pharmacy had run out and given us some one day and the rest a couple of days later.

Friday May 18th Mary Chris went to the Pharmacy to ask about the pills, and the Pharmacist realized that they had put the wrong pills in the second bottle. They had given us a thyroid reduction medication vice the chemo. Mary Chris immediately took Carter to the Oncologist and a series of blood work was drawn. After consultation with the Pharmacy and the drug company they determined that the two doses we forced Carter to take were lower than he would have been prescribed had he been on the medication. We agreed to stop his weekly antibiotic and closely monitor him. The oncologists were concerned about his liver being over worked, and his white blood count (immunity) going down. To date we have not seen any particular ill effect from the mistake. We are waiting to see the report from the Pharmacy, and will be ensuring that the incident is properly reported.

This event made the day stressful, but we followed it up with an after dinner trip to National Airport and a flight to 9PM flight to Manchester, NH. My sister, Libby, graduated from Law School Saturday morning. We had a wonderful time at the graduation. The kids enjoyed spending the day with Aunt Libby and their Grandparents Ginny and Jim. We all look forward to having another Lawyer in the family.

Sunday we spent the afternoon with our friends the Strachans in Topsfield, MA. The kids were reacquainted with Aydan and Aliza whom we had seen in Maine a couple of years before. We raced back to Manchester for our 5PM flight to find out that it was delayed to 7PM. After an hour USAirways let on that the incoming flight had been cancelled due to equipment and started to re-book the passengers. We eventually getting booked on a 830 PM Delta flight out of Boston Logan. USAirways gave us a voucher for the cab ride, but it took us until 7PM to get a cab. Luckily for us we had a suicidal, but savvy cabbie who beat the ridiculous Boston traffic and got us to Logan in time to make the flight. We arrived home about midnight safe and tired.

Last Monday evening we went out for a little dinner, and stopped by the grocery store on the way home. While Mary Chris was in the store I was joking with the kids and Carter’s laughing turned into spitting up his dinner. Although it was a pain to clean up we did not really think too much of it. Carter has had a tendency to spitting up after eating when he has eaten too fast or gotten too excited all throughout his treatment. This usually happens in the morning though. The following morning he was not the same though. He was really sick and could not hold anything down. We took him into the oncologist for a check and they noted that he was severely dehydrated. The drew a series of blood tests to check him out. He started on IV fluid and wound up taking home a portable IV pump for the night. He was able to eat a little later in the day and seemed a little better. The doctors were also worried about his red blood cell count and planned to do a transfusion Wednesday.

Wednesday we returned to the oncologist to remove the pump and Carter had gained an entire kilogram in 24 hours. He seemed OK, and they decided to cancel the transfusion for the time being. We were pleased because whole blood transfusions take many hours.
Thursday morning the oncologist’ office called and stated that Carter had positive blood culture for a bacterial infection. We again rushed in for an unplanned visit. He was given a dose of IV antibiotics, but the doctor stated that the culture detected two strains, which was unlikely, so they again drew a sample for culture.

Friday we returned for our 6th visit in 10 days. The doctors stated that the cultures indicated a staph infection, but they wanted to see more mature results before taking action. They explained that the biggest concern was the presence of the infection in Carter’s catheter. The IV and other antibiotics would not necessarily address such an infection, but all his culture to date had bee drawn from the catheter, so they were a susceptible. They stated that it was likely we would have to have the catheter removed. We actually had an appointment with the surgeon to remove the catheter and replace it with a port in his chest, so this was not too much of a shock. Thankfully throughout this entire week Carter has never really showed the signs of the infection. He had the nausea and was a little tired at times, but he never had a fever or really acted sick. Enev up to this afternoon he was running around and playing like any three year old should be.

This brings me up to this morning. We talked to the oncologist Saturday and she stated that we would likely have to be admitted today. Early this afternoon she called a told us to bring Carter in. The end of today’s story is actually at the beginning of this journal entry. The weird thing about today was the similarity to our first day with Leukemia. Today, the Sunday of Memorial Day Weekend, we were called into the hospital. On the Sunday of Labor Day Weekend we were first called by our pediatrician to hear about Leukemia.

We hope everyone has a Happy Memorial Day.

Jim

Monday, March 12, 2001 at 10:00 PM (CST)

The month of February was a decent transition period for our family. On February 7th Carter had a Spinal Tap and Bone Marrow Aspiration. Both tests resulted in no detectable Leukemia, confirming that he has remained in remission for the last five months. Needless to say we were very pleased. The procedures also marked the end of the Intensification Phase of Carter’s treatment. The end of Intensification means the end of Chemo treatments by the IV pump. Carter has remained healthy, and his blood counts continue to be strong. He has been able to lead a reasonably normal life.
We spent the following two weeks discussing the start of the protocol’s next phase, Intensive Continuation. This phase includes a minor increase in the Chemo Carter takes every night, and a three day oral chemo treatment every other week. The three day treatments consists of four doses of chemo over the first 24 hours at six hour intervals and two doses of “recovery” medication starting 48 hours after the start of the treatment. Carter had his first treatment the week of 19 February. The chemo doses of 6 ½ pills were given at 2PM on Wednesday, 8PM, 2AM & 8AM the next morning. We had an office visit at 10AM to test Carter’s blood and ensure that the appropriate levels of chemo were in his blood. The treatments and office visit were fine. Carter took the pills real well. We were very proud.
The Oncologist’s office called later on Thursday to say that the chemo level in Carter’s blood was OK. This meant that he really ate the medication when it was given, and his body absorbed it at the proper level. On Friday afternoon and 2AM Saturday morning Carter took a single Leucorvorin pill to assist in recovery from the Chemo. Leucorvorin is a concentrated Vitamin B complex that assist the body in removing the chemo from the blood. Overall Carter handled the treatment quite well. He was a little tried over the weekend, but did not exhibit any of the nausea while eating that we had during the IV chemo treatments. Intensive Continuation lasts until the 72nd week of Carter’s treatment. That will take us to mid January 2002. We will continue the bi-weekly Chemo treatments the entire time, and he will have a spinal chemo treatment & tap every 12 weeks.
We conducted the second treatment last week. It went as smoothly as the first. Carter’s blood counts remained stable enough to allow a normal week. We celebrated Ronan’s First Birthday with our friends the Andersons on Friday night. Ronan and their son Daniel both turned one this weekend. Carter was up quite late that night. On Saturday the kid’s Aunt Libby came over for a visit. We went for a long walk in the afternoon, giving Aunt Libby the grand tour of all our playgrounds. The weather was beautiful and the kids ran pretty hard. On Saturday afternoon Carter reminded us that he is in treatment, and need to take it easy. After The walk Carter crashed hard on the couch and slept for about three and a half hours. He woke up just in time for dinner and a family party for Ronan. Ronan ate his first cake, and made a big mess.
We are looking forward to the coming weeks. As we establish a pattern for Carter’s chemo levels and blood counts we expect to reduce office visits to once a week, and eventually every other week. We are planning a trip to San Diego in a few weeks to visit Mary Chris’ family. As long as Carter’s counts remain stable we should have a great trip. After the trip we are planning on having Carter’s central line catheter replaced with a port under the skin in his chest. This will allow Carter more flexibility in playing and swimming as the summer approaches.

Thank You all for your Thoughts and Prayers. We are reminded every day how lucky we are to have such wonderful friends and family.

Jim

Wednesday, January 31, 2001 at 02:50 PM (CST)

Christmas, New Years and the month of January have treated Carter and all of use quite well. We have had a couple of bouts with colds, but Carter has come through them without real incident. Carter completed a treatment that included two shots in the leg & a week of steroids, and the fifth of his six IV Chemo treatments in early January. These treatments started the week between Christmas and New Years, but did not prevent us from having a great holiday. MacKenzie, Carter & Ronan all enjoyed Christmas. They were overjoyed by Santa’s visit. It took days to clean up the basement after the present opening frenzy.
Carter did have a little more trouble with the latest set of chemo treatments. During the first three IV chemo treatments, Carter’s white blood counts recovered well above the acceptable threshold for continued treatment. As we started the New Year Carter’s counts did not recover quite as well. He remained barely above the threshold for neutropenia (a measure of his immunity). If Carter’s counts go below that threshold he will be significantly restricted in his ability to go out in public, and it could hold up the conduct of his chemo procedures.
Carter had a post-nasal cough for the last couple of weeks of December and early January, but the doctors were not overly concerned. For the most part, as long as he does not have a fever or congestion in his chest we just need to keep an eye on him. A fever may indicate that he has an infection his body is having trouble with. Chest congestion is a concern due to the ever-present risk of pneumonia. He has to take an anti-biotic three days a week to help prevent pneumonia. In most cases either of these symptoms will result in a hospital stay for observation.
On Friday January 5th Carter came down with a fever in the mid afternoon. We rushed over to Oncologist’s office to have him looked at. They drew blood for cultures to ensure that there was no blood infection. Carter was tired and grumpy and refused to take any Tylenol or allow Mary Chris to put a cold compress on his head, thus we could not really tell if the fever would go down. By about 5PM we were pretty sure that they were going to admit him to the hospital for the night. Mary Chris and I even made up a list of overnight things we might need. It is very common for pediatric cancer patients to be admitted for this sort of thing. As the staff was closing the office the doctor decided to let us go home. Carter had been in such good health all along that they hoped the fever would pass over night. We were quite relieved. As it turned out a good night’s sleep did the trick, and he was fine the next day.
Tomorrow starts the last of the IV treatments and marks the end of the Consolidation phase of Carter’s treatment. As this phase has drawn ends we have spent some time looking ahead at the remainder of the protocol. The next phase (Intensive Continuation) is actually busier, but less obtrusive and intense. We change from tri-weekly IV treatments to bi-weekly oral treatments with the same drug, Methotrexate. The treatments will start on Wednesdays and last for three days. Carter will have four doses of the drug at six hour intervals starting Wednesday, and will be required to take a recovery drug on Friday ~48 hours after the start of the treatment. The first few times we will have to continue with daily office visits to ensure that the medications are working, but we will eventually be able to cut back to one visit per week. The Intensive Continuation phase lasts for 47 weeks. The final phase (Continuation), which will last for another 36 weeks. Assuming all goes well will finish the treatment in the fall of 2003.
The best news we have had is that we will likely be able to have Carter’s chest catheter removed some time in the spring. From here on out he will only need full blood tests once a month. The weekly blood counts can be performed with a pinprick. The catheter can be replaced with a port under the skin in his chest. The port is accessed with a short needle though the skin, and hooked to the syringe or IV. Changing to the port takes away the need to change the dressing on Carter’s chest weekly and allow him unlimited time in the water (bath or pool). We are looking forward to this change Carter loves the water.
January had very moderate weather. We have been able to get Carter out of the house more. He has been out to a number of parks. Carter loves to run around and has grown much more adept at climbing “now that he is three.” Carter has also been to a few birthday parties and to the library as well. Previously we had been minimizing some of these types of activities. As long as his blood counts remain strong we intend to continue as much activity as possible. We always have the potential for being house bound, so we are trying to make the best of the current situation.
Mary Chris and I have also feel we are ready to explore more of the support opportunities and assets available here in Northern VA. We have been researching on the internet and through the doctor’s office. There are an incredible number of support groups and organizations devoted to children with cancer and their families. There are special programs to attend sporting events and even a camp for children with cancer only a couple of hours away. We are planning on taking advantage of some of these opportunities in the coming months.

We have added some new picture to the web site this week. We appreciate your thoughts and prayers.

Jim

Sunday, December 24, 2000 at 10:42 PM (CST)

I have not had a chance to update our journal in almost four weeks. That reflects the busy time we have had this December. As we prepare for the holiday Mary Chris and I have been able to reflect on the special nature of this year’s Christmas. We have experienced what can easily be viewed as a tragedy, but it has taught us all an incredible lesson. The outpouring of love and support for us has been overwhelming. Carter is a special child at a special age. He is virtually without self-pity. He can spend four days dragging a bag of IV fluid & a pump around behind him, take numerous medications, get poked & prodded by doctors, and spit-up the first few bites of many meals and he barley complains. In the last four months he has learned to take everything in stride. Throughout it all he remain ready to give any one of us a hug and express his love. It has been a humbling experience for us all.

When I last wrote we had just finished Carter’s third of six out-patient chemo treatments, and we were preparing for our trip to the North Pole. He bounced back from the treatment flawlessly. It was not easy, but we all arrived at Dulles Airport at 0700 Saturday 2 December for our trip. Carter, MacKenzie and I were ticketed and boarded a United Airlines plane for the North Pole. The flight crew (including elves and Ronald McDonald) provided non-stop entertainment and goodies. We had a nice 30-minute jaunt around the runways (never actually leaving the ground). Upon arriving at the North Pole (a different gate) we were greeted by an incredible array of entertainment. Mary Chris & Ronan were there along with a limitless assortment of goodies and drinks. There were people dressed up as about every cartoon character you could imagine. There were clowns, makeup and police with motorcycles to climb up as well.

At one end of the terminal there was a playground of brand new Little Tikes climbing structures and teeter totters. All the kids flocked to the playground. Next to the playground there were three Christmas trees covered with stuffed animals. The kids were encouraged to choose any animal they wanted. All the while, volunteer children dress up in costumes walked throughout the terminal offering a never ending array of goodies and drinks. Carter and MacKenzie had a great time. They were a bit overwhelmed by the magnitude of the experience, so they stayed close to the playground. There were a few families we knew from Carter’s Oncologist participating also. Carter’s favorite nurse, Julie, and her family were there as well. Julie’s daughter and MacKenzie hit it off in fine fashion.

After about an hour or so the families were called to the other end of the terminal in groups to meet Santa. The families lined up for photo opportunities with Santa and Mrs. Claus. As we approached Mrs. Clause an elf asked for the names and ages of kids (including Ronan). After sitting on each of the Claus’ laps for pictures we were ushered to the side and presented with three bags of toys. The gifts were chosen to fit the sex and age of each child. This task was performed for the hundreds of children in attendance. We were astonished!

When it was all said and done, the kids were exhausted. We made our way back to the main terminal with five bags of toys and gifts piled on the stroller. United shuttled us back to our car at their employee lot and helped load everything into the car. Needless to say, the experience was overwhelming. We started out December with quite a Christmas onslaught.

The following week was no less exciting. We celebrated Carter’s third birthday on 5 December. He has been very interested in Peter Pan and pirates, so that was the theme for his birthday. We gave him a Playmobile pirate ship and made a pirate ship cake. A few friends came over to help celebrate. We have been trying to limit visitors to the house to minimize exposure to coughs and colds. Although Carter is exposed routinely outside the house, we are trying to keep the house as clear as possible. He has not had any immunity issues to date, and we are trying to maintain a haven in case he does.

The of December has been relatively quiet. Carter has continued his Wednesday doctor’s appointments and has been progressing very well. This past week Carter had his fourth outpatient chemotherapy treatment. Our home nurse came over Tuesday afternoon and set up Carter’s IV pump with saline. Tuesday night I hooked up the pump and started Carter’s pre-hydration. Wednesday morning we had a spinal tap scheduled at 0830. Unfortunately Carter’s white blood counts were too low to start a chemo treatment. Based on Carter’s historical white counts we hoped that they would be better the next day, and we agreed to do another night of pre-hydration.

Thursday the oncologist was very busy. Carter’s counts had bounced up to an acceptable level and we started the spinal tap at about 1000. Just prior to his procedure a family arrive with one of the singing “Billy Bass” novelties. Carter was entranced with it, and played with it until he was put under. The procedure takes about 30 minutes, and he was knocked out with a couple of medications. Carter slept for about an hour after the procedure. He woke up in an OK mood and was able to have some breakfast/lunch and watch a movie while we started his IV chemo. We were able to come home in early afternoon. Although he was tired Carter was Ok with his IV pump. This phase of the treatment is the most sensitive from an equipment point of view. If he separated his IV during the chemo, the toxic drugs could spill, thus we have to watch him closely.

Friday morning was quiet for the most part. At one point Carter & MacKenzie were playing and Carter’s IV began alarming. There was a mild panic. It turned out that a clamp under his shirt had been closed and the flow from the pump had stopped. Both of the children said that they did not know how it happened. My guess was that some little hands were playing with it. Around noon we returned to the oncologist’s office for a 24 blood test. We took the opportunity to wish the staff a happy holiday. After getting a new bag of saline started we returned home.

Saturday we had to have a final blood test, but the oncologist was closed. Carter and I went to the Pediatric Oncology Ward at Fairfax Hospital (the place we started the leukemia treatment) to draw the blood. It turned out Carter’s favorite nurse (Barb) was on duty and she took great care of us. After that blood draw I started a final bag of saline to continue flushing out the chemo. Last night we called the on duty oncologist and she gave us the clearance to stop the flush. I disconnected the pump about 8 PM. Carter went Tuesday night to Saturday night with the IV and all he had to say was that he was happy to be rid of the “stinky bag.”

Carter is all clear for the holiday, and the kids are really really looking forward to Santa’s arrival this evening. We have another week long chemo treatment with steroids starting Wednesday, but that is only a single shot on the IV on two consecutive Wednesdays. We are looking forward to the New Year very much. We hope everyone who takes the time to read our ramblings has a wonderful holiday and Happy New Year. God Bless

Jim

Thursday, November 30, 2000 at 04:01 PM (CST)

The Thanksgiving holiday treated Carter & the Beardsleys quite well. We had a wonderful Thanksgiving dinner at the Matziner-Lash’s house. Carter & MacKenzie had a great time playing with their friend Alexander. Carter’s blood counts have remained strong over the past few weeks removing limitations of our activity. As long as his white blood (immunity), platelet (bruising & bleeding) and red blood (energy & iron) counts remain above a particular threshold we are able to conduct life in a normal manner.

Carter recovered quite nicely from his IV chemo treatment that completed November 10th. He had some bouts with nausea, but for the most part took the treatment in stride. The treatment required him to have a backpack with the IV fluid and a small pump attached to his central line catheter for about two and a half days. The biggest problems we had were reminding him not to get too wrapped up in the tube and forgetting to drag the bag when he moved around. All in all it was better than staying at the hospital and dragging a big IV tree around.

We are in the midst of the third treatment right now. We actually started the IV on Tuesday night to pre-hydrate Carter. Our home nurse brought over the saline and set up the pump in the afternoon. Just prior to bedtime I hooked up the pump and started the IV. Although this was a bit of a pain, it greatly shortened the visit to the doctor’s office the next morning.

Wednesday we went to the doctor’s office to start the chemo and have a spinal tap. Carter was sedated for the tap and we were able to get the procedure out of the way by about 1000. He slept for a while after the procedure. He awoke a little woozy, but was able to eat a little breakfast. On mornings when Carter has procedures he is not allowed to eat or drink. It took a little longer to get the chemo treatment started. Unfortunately, Carter lost his patience. He wanted to watch a movie in the children’s lounge, but we needed to get the chemo treatment started. Carter’s impatience with the wait turned into a full-blown “3 year-old temper tantrum.” The floor was tile, thus I could not put him down to work out the tantrum. I had to hold him kicking and screaming for about 25 minutes. By the end we were both exhausted. Carter pretty much shutdown after that, and slept the whole way home. We were able to get home before two o’clock.

Carter made it through the evening and night with little incident. He had gotten better about rolling around in bed and not getting too wrapped up in the IV tube. This morning he got up in fine mood, and had oatmeal for breakfast. The second office visit of the treatment was this afternoon at 12:00. Carter had blood drawn and the chemo IV bag switched out for a bag of saline solution. We will have a little more than a day of IV recovery prior to shutting down the IV. That should run to early evening tomorrow.

Carter is asleep now (1530 Thursday). He fell asleep on the way home from the doctor’s office. I expect he will be getting up soon though. We are looking forward to a trip the North Pole this Saturday. If Carter’s blood counts remain “good,” we will be heading for Dulles Airport Saturday morning at ~0700. United Airlines runs an event for kids in long term care and their families each Christmas. They load the families up on a plan at the terminal, and fly (drive to the other side of the airport) to the North Pole. At the North Pole there is a party with Santa, gifts, etc…. Carter MacKenzie and I are ticketed for the trip. Mary Chris and Ronan (he’s too little) are going to meet up at the “Pole” for the party. That should be fun.

I have added a new web link to the site. The National Childhood Cancer Foundation has a wonderful site. It has information on childhood cancer, the Children’s Oncology Group (COG) and the current state of fundraising for childhood cancer research. In addition there is information about getting a gold ribbon lapel pin to show support for curing childhood cancer if you are interested. I will update the site next week with a North Pole report.

Jim

Sunday, November 12, 2000 at 10:44 PM (CST)

Early November has been relatively quite for Carter and the Beardsleys. Carter’s treatment has been quite active over the past three weeks though. He followed the hospital stay in October with two weeks of a chemo drug called Vincristine. This drug is taken in conjunction with the steroid Dexamethazone. Carter was treated with both drugs during his initial five weeks treatment. He was only on the steroid for a week this time, and reacted better than the first time. He did gain some weight and increased his appetite. The harder side effect of the steroid was moodiness and tantrums. Carter is normally very easy going, and it was hard to give him room to work through his emotions. We were better prepared for these effects this time. In the time since he stopped taking the steroid Carter has returned to his normal copasetic self.

Last week Carter had the second of his six IV and Intrathecal (in spinal canal) Methatrexate treatments. The first one, three weeks ago, was in the hospital. This time we started the treatment in the doctor’s office, and managed the majority of the treatment at home. After his spinal tap Carter was “hooked up” to a small pump in a soft backpack. The backpack held over 1 ½ liters of Methatrexate fluid. Carter was not able to wear the backpack when it was fully loaded, he almost fell backward when we tried to put it on him. After about six hours in the doctor’s office we were able to come home. The nurses gave us a quick lesson on the basics of the system, and we have an on call home nurse in case something went wrong. The care was up to us.

Carter took the restriction of the backpack quite well. We brought a small “kid’s size” plastic shopping cart into the house, and Carter used that to move about the house for a while. He became quite proud of the cart and started loading it up with toys, a mobile play area. Eventually Carter lost interest in the cart and took to dragging the bag around with him. We was not able to take it up and down the stairs, but that did not stop him from trying. He needed constant supervision to ensure that the line from the pump did not get pulled out or kinked and blocked. Every two hours we opened up the bag to checked the pump and lines. This included the whole night. In addition, we had to closely monitor Carter when he slept. He tends to move around a bit in bed, and I was afraid he might get the IV tubes wrapped up. We had the same situation in the hospital, and I became pretty used to checking him whenever he became restless. He slept with a monitor and I wound up spending much of the night with him. In all the night went smoothly.

The next day we returned to the doctor’s office about 24 hours after the start of the IV treatment. The methatrexate IV bag was empty after 24 hours. They drew blood to check the level of chemo in his blood streams and hooked up the pump with 24 hours worth of saline to start the chemo recover process. We made it home by late afternoon with a short stop at MacKenzie’s school for a parent-teacher conference. Her teacher reported that MacKenzie has adjusted quite well to Kindergarten, and that the situation with Carter has not appeared to affect her performance in school.

After another day and night of dragging the bag around we started a recover medication in the morning to assist in clearing the chemo out of Carter’s blood. This drug is every 6 hours for 24 hours. We returned to the doctors office again that afternoon for another blood draw and more saline in the pump. That visit was quick, and we were home by about 4 PM. Shortly after we arrived home the doctor’s office called to report that the level of Chemo in Carter’s blood was low enough to discontinue the saline. We shut off the pump and disconnected it from his chest tube with little problem. That night he had to take some medication, but was finished with the treatment for the most part.

Carter has been taking the treatments pretty well. There are many potential side effects to all the drugs he has been taking, but he has managed to remain quite healthy thus far. The only side effects we have observed are the loss of hair (that stopped a month ago) and some nausea. It is hard to detect nausea in a two year old. I tried reading the dictionary definition, but he just didn’t get it. We have had some vomiting at various periods, but that is normally linked to eating too fast or certain foods. In particular Carter is unable to drink orange juice during the methatrexate treatments, and he has to take his weekly anti-biotic in very little sips to keep it down as well. This is something we have to watch.

Today we had a real treat. Through Carter’s Oncologist’s office we were able to get four tickets to a Raffi concert at George Washington University. For those of you without kids, Raffi is a world-renowned singer of children’s songs. The tickets were donated to the office, and we were all able to attend the concert. Carter had a ball dancing and singing. He did get a little tired at the end, but it was a very enjoyable afternoon.

It is hard to believe that it is already the middle of November. The Fall has flown by. Overall we are marching our way through Carter’s treatment. He is handling the treatment as well as any two year-old could be expected. We are managing it as well. MacKenzie is starting with a group of Siblings of Kid’s with Cancer next week. Hopefully she will be able to learn more and express herself with the group and counselor. As a five year old she sometimes has trouble communicating with her parents. We have a few week rest before the next treatment. The next three-day chemo cycle does not start until after Thanksgiving.

Happy Veteran’s Day and Thanksgiving. Hopefully we will have a president elect before our next journal entry.

Jim

Sunday, November 12, 2000 at 10:44 PM (CST)

Thursday, October 26, 2000 at 09:59 PM (CDT)

The past week has been a surprisingly quiet one for Carter and the rest of us. The in-hospital chemotherapy that started last Wednesday never really produced ill effects for Carter. He completed that treatment Thursday evening, but needed to IV therapy and a “recovery medication” to remove the chemo drug from his system. I stated last week that we were hoping to be discharged from the hospital Friday night, but the whole course of the chemo treatment started too late on Wednesday. The doctor wanted to wait until very early Saturday to for one final blood test to ensure that the majority of the chemo was gone.

Carter’s doctor was in early Saturday morning, and he signed the discharge paperwork before Carter could finish his breakfast. We bugged out of the hospital at about 0800. On the way home an advertisement for Duncan Donuts came on the radio. Carter knew the MacKenzie had stayed with some friends the night before, and said “Hey Dad, we should get some donuts and pick up MacKenzie.” In other words Carter wanted to see MacKenzie and the people with whom she had spent the night.

After an obnoxiously long wait at the donut store we bought our donuts. Carter was completely out of control at the store. He was a little stir crazy from the hospital, and ran all around the store. All the while he was talking up a storm. It was almost as if he was doing a stand up comedy routine. Carter has a special way to light up a room.

The remainder of the weekend was relaxed. Carter seemed to be fine. His appetite was a little less than usual, but not much. During the week he has spit up a couple of times. Each time he has tried to eat or drink too fast thought. Orange Juice in particular seems not to agree with him, so we have cut that out of his diet. He also had some canker sores in his mouth early in the week. These were expected and went away in less than a day.

Wednesday, we had the first of two weeks of another chemo treatment. The appointment was actually at the oncologist was quite short. We were in and out of the office in a couple of hours. The doctor did note that Carter’s Red Blood counts were a little low though. She asked us to bring him in later in the week to check the counts and probably have a whole blood transfusion. Carter will be going in tomorrow morning.

Overall Carter has been taking the treatment well. On the outside he is appears to be a happy, healthy little boy. His hair is thin and will likely start falling out again in a week or so. We are trying to keep a hat on him when he is outside as much as possible.

Carter has another treatment like Wednesdays, next week. In addition during the week between the treatments he is taking the steroid he was on for our first four weeks. I do not believe that one week of the steroid will affect his appetite and behavior like the last time.

That is all for now.

Jim

POST ENTRY NOTE: On Friday Carter had an office visit, and his blood counts had recovered from those on Wednesday. As a result he did not need to have a blood transfusion, and the office visit was pleasantly short.

Thursday, October 19, 2000 at 10:13 PM (CDT)

Hello Friends and Family.

The past few weeks have been very low key for our whole family. Carter’s treatment regime has been limited to some medication in the evening. We have, to the max extent possible, been able to establish a routine.

Yesterday (Wednesday) the real chemotherapy started. We had a doctor’s visit in the morning where we were planning on having a spinal tap and a chemo treatment in the spinal canal. Due to the anesthesia required for this treatment Carter was not able to eat breakfast. After arriving for our 0900 appointment the nurses told us that the oncologist wanted to perform the procedure in the hospital. We had been planning on having Carter admitted to the hospital in the afternoon for a 24 hour chemo treatment anyway, but the delay put a lot of pressure on Carter’s great disposition.

As usual nothing is easy with the oncologist. It took about four hours for the hospital to free up a room for Carter. He hung in like a trooper, and we were admitted about 1300. In took another two hours for the spinal procedure to be set up, and it was all Carter could do to remain calm. The procedure went quite well. The actual spinal tap took about 15 minutes and he slept quietly. I had an opportunity to change his chest dressing and clip his nails while he was asleep.

Carter finally woke up about dinnertime, but insisted on having breakfast first. At least his appetite has not changed. Carter was actually quite happy. He was able to watch his brand new copy of Toy Story II. After the spinal treatment we found out that he needed to be hydrated and his urine pH needed to be lowered prior to starting the IV chemo treatment. The process of hydration, etc.. lasted until 8PM. We started the 24-hour chemo treatment at 8:15.

The treatment required Carter to be on a special IV for the entire period. In addition to the IV he needed to have his vital signs and urine checked every couple of hours. This made the night a little more busy than the last hospital stay. Thankfully Carter slept quite well.

Today (Thursday) Carter spent the morning with his Grandmother, Ginny. I went to work in the morning expecting Mary Chris and Ronan to arrive after getting MacKenzie off to school. Unfortunately, Ronan woke up with a strange rash. Mary Chris took him to the Pediatrician, and they decided that the rash was an allergic reaction. Mary Chris had a flu shot on Wednesday, and it is likely that Ronan’s reactions was to the eggs in the flu vaccine. Mary Chris arrived at the hospital in the late morning to find out that Carter’s newly arrived roommate needed to be separated from potentially sick kids. Ronan was sneezing, and had to be kept out of the room. Mary Chris & Ginny took turns between Ronan and Carter until the early afternoon.

Carter had a busy day. He exhibited no ill effects from the chemo. He made a bunch of picture with glue and other things during the pre-school age activity time in the morning, and played outside on the pediatric floor’s playground for while. He had a pretty good day. In the afternoon MacKenzie came by after school to visit, and Carter enjoyed her company.

Carter is sleeping now (~11PM) he finally gave out about 9:15 and dropped his head on the pillow. Luckily he fell asleep quickly about 20 Minutes later new roommates arrived and their has been quite a commotion. We are hoping to go home Friday evening, but will more likely be staying for another night. I will speak to the doctor in the morning. That is all for now.

Jim

Tuesday, October 10, 2000 at 09:47 PM (CDT)

The last week has been a calm learning experience for all of the Beardsleys. Last Wednesday we learned that Carter was in Remission and received the protocal he would follow for the next 19 weeks. We also started an oral medication every night at bed time that Carter will be taking for the remainder of the treatment.

The best part of the week was the return of our "Old Carter." After stopping his steriod last Tuesday, Carter slowly has regained his happy, go-lucky demeanor. He has become much more active and talks up a storm. One of our goals is to get out every day and ensure he has a nice walk. This will help reduce the incidence of constipation, lose some of the weight he gained over the last three weeks, and expend energy. Carter and MacKenzie have lots of energy to spare.

We had a quiet three day weekend with plenty of family time. On Sunday we went to Burke Lake Park (about 15 minutes away). Even though it was a little chilly, we all had fun riding the Miniature Train and the Merry-Go-Round. The kids played on a playground for a while with some friends as well.

On Monday morning after a nice breakfast of waffles and sausage (Carter's favorite), the Oncologist's office called and asked us to bring Carter in. On the previous Wednesday, the doctor had swiped the site of Carter's chest catheter for possible infection. It turned out to be a little yeast infection. This is not too big of a surprise due to the steriods he had been taking.

Carter and I stopped off at the office, and the doctor gave me a prescription. In addition I had a chance to ask a few questions while Carter schmoozed the nursing staff. His big smile pretty much has them eating out of his hand. The doctor gave me the road map for the remainder of Carters 2 and a half year treatment. While it is nice to know what is ahead for Carter and the rest of us, it was a lot to absorb in one day.

In the short term we will have a spinal chemo treatment next Wednesday, and enter the hospital that afternoon for a couple of days. Carter will be recieving a relatively significant chemo treatment by IV, and needs to be monitored for a while after the treatment.

All things considered, we are doing quite well. Thanks You for the thoughts and prayers.

Jim

Thursday, October 05, 2000 at 03:45 PM (CDT)

The past week has been then most normal so far for our family. Carter has made a little bit of a transition though, four weeks on steroids has caught up with him. He has put on about five pounds (a 17% increase), mostly in his chest and face. He looks bigger than the Pillsbury Doughboy. The old Carter remains inside as always, in particular when he smiles. His mood swings and the weight gain have made Carter a little unmotivated to do anything but eat and rest, but do have good news…

Carter is in REMISSION, the induction phase of his treatment is over. As of Wednesday morning Carter had no noticeable Leukemia cells in his blood and bone marrow. This is the first major milestone in his recovery. We are now entering the Intensification phase of treatment regime. This stage means that Carter has stopped taking the steroid for a number of weeks, and should return to his normal size. In addition he is no longer considered Nuetroponic. This means that he has enough infection fighting white blood cells to allow him to he exposed to most normal situations. In particular people with minor ailments no longer have to wear a mask around him.

We decided to participate in a nationwide study of childhood leukemia patients that randomly chose his treatment protocol from four options. This study varies the periodicity, dosage and number of chemotherapy drugs used for treatment. The goal of the study is to further refine the “commonly accepted” treatment to maximize successful recovery. As it turned out Carter was chosen for the option that most closely matched our practice’s standard treatment.

The protocol covers 24 weeks and is made up of a series of three-week treatment cycles. These cycles include a 24-hour IV dosage of one medication as well as a dosage in the spinal canal. The first of these treatments will be in the hospital and is scheduled for two weeks from now. If there are no complications from that treatment we will likely administer the remainder of the treatments with a portable IV pump at home. There are a few additional IV Chemo treatments during the treatment period and an oral medication Carter will take every night. This may sound like a lot, but it is actually less complicated than some of the other regimes in the protocol.

After the Intensification phase of the treatment is complete we will enter the Maintenance phase. This phase will take about two years, and required less frequent chemo treatments.

In other news we all went to the Yankees-Orioles game in Baltimore last Friday night. We arrived after the game started and left before the end to minimize the time in the crowd. That was OK though. The kids could only handle so much of the atmosphere, and the Yankees were pretty well beat up. Carter’s highlights of the game are the 2 hotdogs, french fries and Sprite he consumed. In addition, there was a fan dressed in a “Tigger suit” (from Winnie the Pooh) in the next section dancing and singing. Both MacKenzie and Carter loved that.

We had a wonderful, warm weekend here in Northern Virginia. We made every effort to get outside and enjoy the weather. Carter did spend a while outside, but he tired easily. In addition we have to be quite careful of his sun exposure. His medication makes him more susceptible to sunburn. Also he is loosing his hair more quickly, so we are trying to keep a hat on him most of the time. We also had a little Birthday celebration for Mary Chris on Monday. Carter’s sweet tooth has returned, and he is looking for cake every night now.

That is all for this week. Unless there is a big event over the next couple of weeks I will not likely update the web page until our hospital visit. Thank You All for the Notes And Prayers.
We are doing about as well as you can expect under the circumstances.

Jim

Wednesday, September 27, 2000 at 10:03 PM (CDT)

It has been a good week for all of us. Mary Chris and I have become a little more accustomed to the intricacies of doctors visits and the effects of chemotherapy. Carter has been taking the treatments quite well, and has become much more comfortable in the doctor’s office. Although he has surprising mood swings from his medication, his smile continues to cheer up those around him. We have had the opportunity to meet other parents and children at the office, and have learned that we are not alone.

Carter has maintained his voracious appetite this week. He pretty much wants to eat continuously. Breakfast can be three courses long, and often lapses right into a snack. The snack easily slips into one of many “lunches,” which can last all afternoon. He has been putting on some weight. The doctors tell us that this will be temporary. After he discontinues the steroid next week his appetite should gradually decrease. In fact, the nature of the next phase of chemo may even take most of the appetite away at times. Carter’s face in particular has puffed up. He really looks like a doughboy. The hardest part of the last week has been the gradual loss of Carter’s hair. It started slowly, but now it is clearly coming off on his shirts and anything he rubs against. The doctor told us that he will probably not grow back his hair for quite a while. It could take as long as six months. He should wear hats in the winter anyway.

Today was a big day for Carter’s treatment. He had his last chemo treatment for the “induction” phase of his protocol. His blood work has recovered quite well, and we do not have to return to the office for a whole week as long as he remains healthy and happy. This phase ends on day 29, next Wednesday. Carter will have a bone marrow aspiritation and a spinal tap that day. The results of those tests will confirm that he is in remission (less than 5% of white blood cells are leukemia). Those results combined with genetic tests will be used to determine his followon course of treatment.

Mary Chris & I had a discussion with the doctor this morning about their expectation for that treatment today. Carter’s genetic tests indicate that he is normal risk. There is a low risk category, but the recovery rate for normal is greater than 85%. Normal risk and his expected remission will put Carter into a two-step “consolidation” phase of treatment. This phase is variable depending on the study for which he is randomly selected. He will be in consolidation for at least 24 weeks and could be as long as 32 weeks. This phase includes a larger mix of medication as well as more intense periods of chemo. There will be at least one hospital stay for about two days. If that goes well we will be able to perform the same treatment on an out patient basis.

If that all sounds confusing, you should try reading the clinical descriptions of the protocols. We are slowly digesting the data we received today, and will hopefully be ready Wednesday when we reach the first really significant milestone. In any case Carter is doing better. His immunity is returning, and his blood counts (platelets, white blood cells and red blood cells are all increasing). By Wednesday he should be clear to play and go just about anywhere. As long as his platelets and white blood counts remain strong, he is able to fight infection and clot when bleeding. In that condition he is just like any other child. There will be periods when these will be reduced through the follow-on chemo, and we will tackle those times as they come.

Again we thank everyone for your good wishes and prayers. It is with the love and support of our friends and family all over the country that we will beat this.

Jim

Wednesday, September 20, 2000 at 01:48 PM (CDT)

I apologize for the delay in updating this journal. We have been busy trying to establish a stable day to day routine, and have learned that it will not be easy. We have had a couple more office visits, and are becoming more accustomed to the daily maintenance required for Carter’s home care.

Last Friday the doctor asked us to bring Carter in for a blood check up. Assuming that a check up would be routine (no chemo) we decided that Mary Chris would take Carter and Ronan in first thing in the morning. What we learned is that there is no such thing as a quick trip to the oncologist. Carter’s blood work indicated that he needed a platelet transfusion and that he might need insulin. There was even talk about returning to the hospital. At that point I left work and headed to the doctors office. Carter (being two) does not like going to the oncologist and having to stay there for long periods of time. Carter's impatience and taking care of Ronan was too much for one person. In the end we were there for six hours.

The weekend went well for all of us. Carter was able to get out and play a little, and we were able spend quiet time together at home.

Monday, Carter was scheduled for a chemo treatment and his blood work indicated that he would need a whole blood transfusion. That process takes quite a while. In the hospital they did it at night while he slept, so we did not really realize how long. After about four hours they received the blood at the office, and it took a few hours for the transfusion. In the interim Carter had a chemo shot in his leg, which he took pretty well. Unfortunately, he rapidly lost patience with the movies, books and games we gave him for entertainment. Mary Chris spent most of the afternoon with him miserable and screaming, and they did not return home until after 6PM. In the afternoon Ronan and I took MacKenzie to meet with a counselor who is organizing a group of siblings of kids with cancer at the hospital. They had a real nice discussion and MacKenzie is looking forward to the group’s first meeting. One week at home finished.

Tuesday was the first full day at home for Mary Chris, Carter and Ronan. Things went well and Carter was as much a happy little two year old as he could be. He tends to get tired easily and can only play for finite periods of time. He has developed significant appetite and tends to be quite specific in his requests. He has a real preference for pizza with sausage and olives.

Our home nurse will be coming over this evening to assist with the dressing on Carter’s chest tube. To date we have been changing the dressing every two days. After today we will use a clear plastic cover over the tube’s entry point in his chest. The cover only needs to be changed weekly, and is waterproof. This will make life a little easier. In addition, on days when Carter does not go to the doctor, we have to inject saline and heparin into his tube to ensure there is no clotting.

Tomorrow is another big day. Carter is scheduled for two chemo treatments tomorrow, and will likely need some other blood work. “Just another day” with Leukemia.

We would like again to thank everyone who has helped out with a meal. They have been wonderful. In addition we have had a number of out of town family and friends offer to help out with meals. We are working on finding a caterer or restaurant to provide this type of service. We have meals lined up to through next week. I will identify the details on any arrangements we make to those who have indicated interest. The best way to communicate with us is via the eMail address below, including your telephone number.

Jim

Wednesday, September 13, 2000 at 03:12 PM (CDT)

Wednesday has been a hard day for all of us. Carter had his first office visit this morning. The visit included three chemo treatments, a spinal tap and a bone marrow sample. As if that was not enough he had to fast through breakfast due to the anesthesia required for his procedures. He was really angry about missing breakfast.

One of the drugs Carter is taking is a steroid, and it has really given him an appetite. He ate four hotdogs for lunch on Tuesday. This afternoon he ate a waffle and three pieces of sausage (to make up for missing breakfast) and three pieces of pizza. That is a lot for someone that only weighs 30 pounds.

Carter was rather groggy after his procedures today. He was so sound asleep, the doctor had to give him medicine to wake him up. He immediatly started to talk about eating, but soon became angry (a common reaction by young children to anesthesia). As stated above he at quite a lunch, and played with his sister for a little, but soon tired and is sleeping quietly on the couch now. It has been quite a day.

The doctor's visit went quite well overall. The doctor's and nurses were really nice. Virtually all of Carter's follow on treatment will be out-patient. The practice we are using is completly geared toward pediatric hemotology and oncology patients. The office has an extensive play area and a full time coordinator to help entertain & care for the kids while they are being treated. Most of the chemo treatments are performed there. In addition the families in treatment develop great bonds. There a family outings and all sorts of activities. Wea re really entering a whole new world.

So far life at home has been good. We have had some challenges, and the learning curve is steep but we will make it. In particular, creating a germ free environment is a challenge. In addition, we were faced with a unique challenge almost right away. Monday night (the day we came home from the hospital) MacKenzie came down with a 103 degree fever. She has missed school Tuesday and Wednesday, and is at the pediatrician's right now. The most difficult task for us is keeping her from infecting Carter (he has a very limited ability to fight infection at this point). They have to be separated and/or she has to wear a mask around the house. The two of them really love to play together, and managing the situation has taken significant patience. Nothing is easy.

We have recieved a number of generous gifts from friends and family, and we appreciate them very much. Unfortunately a situation has developed where MacKenzie is feeling a little left out. We would really prefer to hold off on further gifts for Carter. The kids have many toys, books, games, etc.. The outpouring of love and affection we are recieving from the guestbook on this site, in the mail and eMail are more than enough. If you would like to help out please let us know via the eMail (at the address below) with a phone number. We have some friends who are trying to coordinate help to ensure we have support when the treatment is most intense, and they will contact you. Thank You all again.

Jim

Monday, September 11, 2000 at 09:18 PM (CDT)

We are home!

Carter's blood work came in surprisingly strong this morning, and his doctor put in motion all the requirements for us to pack up and leave. We recieved the final instructions for Carters medication as well as the prescriptions he will need. In addition, our social worker made arrangements for our home care nursing agency. The biggest event was when the nurse disconnected Carter's IV. He had been dragging around an IV tree that beeped all the time for six days.

We were all packed up and departed the hospital at 1330. We arrived home to find a pristine residence. A number of our friends scrubbed our house from top to bottom. Carter was really happy to be home. He ran around the house, read books and played with his sister. After a while we went outside to play. Carter was tentative about playing outside as were the neighborhood kids. We will have to get everyone comfortable with Carter's condition and the restrictions he has to live under.

We will meet with our home nurse tomorrow (Tuesday). On Wednesday Carter will have a big day. He has his first out patient office visit. This will include two chemo treatments and a spinal tap. He will likely have tough day. This will be the first of many.

In any event, we are safe and sound at home. Thank You all for you notes and prayers were are eternally greatful.

Jim

Sunday, September 10, 2000 at 08:32 PM (CDT)

This weekend was a down and up time for Carter and the Beardsley family. Carter had a tough day on Saturday. He was very tired. Although he tried to play a little with his sister, he spent most of the day napping. In the evening he did eat a little dinner, his first real food in a couple of days. He again had a good deal of trouble taking oral medication, and was not able to get down for the night until late.

Sunday on the other hand was quite different. He awoke at 0715 in a relitively good mood. After some TV and a little nap he asked for a hotdog and some chicken nuggets. He wound up eating two hotdogs and drinking a good amount. This was a real step as he had not displayed much of an appetite.

During the day Carter had to take a number of medications as well as have a chemo shot in his leg. He remained positive and playful through all.

In the late morning Carter's doctor stopped by for her daily physical exam and Q&A session for Mom and Dad. We discussed the progress of Carter's chemo and his blood chemistry. The doctor stated that all indicators were on track and we have a good chance at going home tomorrow (Monday). We were overjoyed!

In addition to attending to Carter the hospital staff have been preparing the whole family for the rapidly approaching home care responsibilities. We practiced changing the dressing and flushing his central line catheter. Carter really loved that. In addition we started map out the remained of the induction phase of his treatment. If all goes according to plan we will be finishing this phase on 4 Oct.

We have learned an incredible amount in the last week. It is hard to believe that one week ago Carter and I were spending our first night in this room. The staff in the Fairfax Pediatric Oncology/Hemocology Ward have been wonderful to all of us. They have made this potentially disasterous experience livable.

This afternoon Carter had a number of visitors. Including the delivery of a wonderful spaghetti dinner. Carter thoroughly enjoyed the dinner, eating a big plate of spaghetti and two meatballs. We want to thank all of our friend who have made meals for us during our hospital stay. It is my understanding that we have meals arranged through late September. That is incredible. Thank you all!! Special thanks to Mari Anderson for coordinating this effort.

Jim

Friday, September 08, 2000 at 08:36 PM (CDT)

Thank you to all who have visited the site and left your good wishes in the guestbook.

Today was a hard day for Carter. Yesterday was his first full day of Chemo, and he started to feel the effects today. One of his medications has the tendency to bring on mood swings, and we have been experiencing them. In addition Carter continues to have trouble taking medication, and that has been hard on all of us. Never the less it is the only way for him to get better. He is getting a lot of rest, and we are trying to stay busy. The hospital has a wonderful program to provide the kids an outlet, called Child Life. The program has a large video library, toy, a play room and organized activities & crafts. In addition the counselors and volunteers come to the room to help him through procedures with games and distractions. We have been working with Carter to get out of the room and keep him busy.

On the medical front, the doctors told us that Carter's Chemo is progressing as expected. He no longer has a fever and has been taken off of anti-biotics. This is a significant milestone because the chemo will be killing all of his white blood cells (among other blood components) over the next few weeks. Without white blood cells it will be very hard to combat infection.

That is all for the end of our first week in the Hospital.

Jim

Friday, September 08, 2000 at 08:36 PM (CDT)

Thursday, September 07, 2000 at 09:17 PM (CDT)

For those of you who have not heard we found out that Carter had Leukemia on Sunday, 3 September at 0730. We had been worrying about some really ugly bruises Carter had on his legs and arms the week before. In consultation with our Pediatrician we had some blood tests drawn on Saturday, and the tests indicated Leukemia.

Needless to say we were completely shocked. (The shock is no less upon us today.) The doctor arranged to have Carter admitted to the Hospital immediately. We took some time that morning to go to church and have a family lunch. Sunday afternoon Mary Chris, Jim, Carter and Ronan arrived at the hospital in the middle of the afternoon. Carter was admitted right into the Pediatric Oncology and Hematology Ward, and we were given a single room thank goodness. In the last four days we have made the room as much like home as possible.

The doctor examined Carter and his initial blood work. The blood work confirmed “Blasts” which are cancerous white blood cells. She explained that he would need a bone marrow test to absolutely determine that the variant was Acute Lymphoblastic Leukemia (ALL), but she felt strongly that it was. ALL is the most common of childhood leukemia and the most survivable.

On Tuesday Carter had surgery to implant a catheter into his chest to alleviate the need for more needle sticks for drawing blood and intravenous drugs. In addition, the surgery included the bone marrow draw and a spinal tap. The bone marrow and spinal tap were for analysis of the leukemia. Carter’s first chemotherapy was put into his spinal canal during the spinal tap.

On Tuesday afternoon & Wednesday Carter slowly recovered from the anesthesia, and we waited for the test results. Late Wednesday the doctor confirmed the ALL diagnosis, and explained the course of Carter’s first 28 days of treatment. The protocol includes three drugs for chemotherapy that will be used for 28 days. After that point Carter should be in remission. If so, we will continue with chemo on a one-week in every four months cycle. This will continue for about two and a half years. After a week or so Carter will be released from the hospital and the remainder of the treatment will be out patient.

As of Thursday night Carter is doing well. He has had one full day of chemo and is hanging in. He was out in the Hospital’s courtyard this afternoon riding bikes and playing with his sister MacKenzie. As for the rest of us we are getting along one day at a time. Mary Chris and Ronan are spending the day with Carter and going home at night. We are blessed that the Hospital allows an infant on the Oncology Ward. Our nurses and doctors are wonderful and teaching us how to take care of Carter.
MacKenzie started Kindergarten this week and is doing well. Conveniently her school is only a mile from the hospital. She visits in the afternoons. I am living with Carter in the hospital. I have been home for a little while most days, but mostly we are here with him.

Jim Beardsley

P.S. See the web links for some good childhood Luekemia background information.

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