Day 18: Home Again

Braxton has returned home once again. His second round of chemo would have to be called a success, although Braxton will tell you firmly that "Hospitals suck!"

So far Braxton has not had any serious side effects from the chemotherapy, but we will probably start to see the effects during the course of this coming week. With or without side effects, Braxton will be back to facing the ever present problems of isolation and boredom. Hopefully this will get easier as he goes along.

The other big news as Braxton returns home today: SNOW!

Minneapolis is getting hit by a spring snowstorm today. Four to six inches of snow is predicted and it looks like we're getting all of that, maybe more. And it's heavy snow, too. Time for me to go home and start shoveling.

Thanks for checking in and thanks for the comments. Braxton likes them!

+ posted by David.

Fun With the Lundeens!

Bethany, Braxton, John, and Sarah in the Teen Room



John, Braxton, and Bob



Beth, Braxton, and Bob

day17: busy day

Today has been a busy day. We had a good night's sleep then the day started at 8 with chemo and breakfast. I went to a training meeting at 9 to learn how to give Braxton his GCSF injections to keep his platelets up. He will have them daily after his next round of chemo in April until he comes back for round 4. I got back to the room at 10ish to get Braxton dug into homework before the day gets busy, and then the day got busy. The Lundeen family came to visit around 11! Brax was happy to have friends around and he, John, Sarah and Bethany disappeared into the Teen Room while Cindy, Todd and I sat in the lobby and chatted. Nice to see other adults who aren't nurses or doctors! Later we had lunch with them up on the 8th floor. Braxton thought that he had enough time left on his battery and fluid to be gone awhile longer but then...over the loudspeaker we hear "Mr. Braxton please return to the 5th floor". I guess they're tracking us down again. Braxton is getting a rep for not being in his room. "Where is he now?" I like to get us out of the room to see light, take a walk, change of scenery...we usually come back on time.
The Lundeens went home and then Braxton and I dug into homework til Barb, Rich and Emma arrived with dinner and birthday cake from Paul and Gretchen's party. We visited with them for awhile and introduced Emma to cold pizza :). Thanks for coming by Barb and Rich!
Braxton is calming down from visits, checking on basketball (Go Kansas!), and eating carrots. Brad will get here soon and I'll return home to put kids to bed and get ready for work. David has had a full weekend of driving kids and feeding kids. He is anxious to share that work now!
Happy birthday to Kyle Nord (my nephew)! I hope you had a fun birthday party!
Braxton goes home tomorrow! Round 2 is almost at an end, and Braxton is still feeling good. Yeah!
-posted by Beth

Day 16: p.s.

Thanks for the notes today! It's fun to check my blog a couple times a day and see who's been reading it. I'm still doing good with my bracket picks. GO KANSAS!
posted by Braxton

day 16: same place, different day

Hello fellow bloggers,
Today has been a pretty good day. Braxton had another chemo treatment in the morning, but is still feeling good. No nausea yet and he's been very hungry! That's the prednisone working. Today we tried to knock off some homework assignments and spent alot of time out of the room. We went to lunch in the cafeteria and enjoyed a table by the big windows in the sun. Then we moved downstairs to the hospital lobby to spread work out on a coffee table and sit in the big chairs. A change of scenery and people watching was good for Braxton. We got some work done, but Brax is tired today. Back to the room for some tv and DS play. David brought the kid clan by, after supper, to play some board games and hang out a bit. We had cake and pizza for Gretchen and Paul's birthdays and played Sequence. Braxton's monitor beeped the end of game time. Out of hydration and battery power so the party was over. If you don't come back to your room when your fluid is empty, they send out the nurse patrol to find you. We were met in the 5B hallway by our nurse ready to refill and plug Braxton back in. Nice to know they're looking out for him:).
We're both tired tonite. Not much sleep for me lastnight and Brax's nausea meds make him tired. Hopefully it will be an earlier bedtime and a quieter sleep.
more tomorrow family and friends...
posted by Beth

Day 15: Hospital trip #2

Hey everybody! It's me, Braxton. Today was an okay day. It started at 7:30 when I had to wake up for a spinal tap( suctions up to one tsp. of spinal fluid out of your spine to test it for cancer cells). They also gave me a chemo treatment in my spinal fluid. After I woke up from that, I went back to my room to start my chemo therapy. I get my chemo therapy in my room through a tube that is connected to a port in my chest. The medicine drips from a bag through a tube and into me!:) Chemo therapy has many different affects on your body. The most visible affect is hair loss, which has not happened to me yet, although I have shaved my head. After they got my chemo started I could do whatever I wanted, within reason. I am attached to a tower of tubes that follows me everywhere. At about 1:00 my dad left for work, and I was by myself until my friend and his dad came at 2:00. When my friend got here we played Lord of the Rings on the PS2 the hospital has. After a little PS2, we watched Ferris Bueller's Day Off, because it's a good movie, and my family says we are very similar. I just checked my blog and saw all the comments from everyone at Highview. Thanks! Keep writing! Right now my mom and I are watching the NCAA basketball tournament. To be continued...

Day 14 (2008-03-27)

Braxton had an early morning at the U of M today. A 6:45 arrival for a PET scan, to check out a shadow on his right arm, turned into another 2 hour delay or so. Braxton has grown very patient with going here and there and just waiting til his name is called. He checked into his new room for this weekend and has another teenage roomate. He will be leaving on friday, though, so we'll see who else checks in. Maybe Brax will have a room to himself for a day or so. Armed with a tub full of video games, a computer, and his basketball bracket for the BIG games Braxton is as ready as ever for another 5 day stay. Brad is with him today and tonite.
We waited all day for Dr. Koo to come back with results from the scan and he, finally, did at around 5 pm. Braxton has another tumor on his right arm. I don't know exactly where it is or how big since I wasn't at the hospital when the doctor spoke to Brad. However, the tumor will be treated in the same way as the other cancer in Braxton's knee. Chemo therapy will work on it. The good news is that there seems to be improvement in his knee area from the first chemo treatment last week! That is very good news indeed!
Bayley, Zoe and David went to visit Brax after school and I stayed home with Emma who has a weird rash on her face. Not major but shouldn't be passed around the hospital.
more tomorrow... posted by Beth

Day 13: Countdown to Chemo Day

Hello bloggers!
It's been a good day. Braxton has recieved some more cards and notes from friends and family. went out to lunch with his dad, AND we shaved Braxton's head! He wasn't quite ready to go all the way down to baby skin so we stopped at stubble. His hat has more room in it now! :)
Homebound schooling is getting organized and may start next week, if Braxton is feeling well. Thankyou Mr. R and Mrs. Wielinski!! We're happy to have you on our Team. I'm not quite sure what it will all look like. I guess we'll all be learning together.
Braxton went to church youth group tonite! He wanted to go and see people while he's still got some immunities working for him. He had fun and I got to catch up with a few folks inquiring about our family. Thankyou to friends who caught me to chat. I will be having Braxton's web address posted in the church bulletin for anyone who wants to follow his journey. We have been overwhelmed with support of friends and family. Braxton is quite touched by all of you.
Well, tomorrow starts early (6:45 a.m.) with a PET scan of his arms to investigate a questionable shadow on an x-ray. Then he'll be checked in to start a 5 day stay on "the floor". Braxton's attitude is good and God is great.
-posted by Beth

Day 13: Chateau Braxton

Today Braxton is at home in an improved space. We have decided that during the times when he is really sick, he would be more comfortable dwelling in the basement where he can have easy access to his media and other amenities without leaving the bed.

So we went out this past weekend and purchased a sectional sofa sleeper which arrived yesterday. Beth and I picked it up in my sister's small pick-up truck and the family moved it in and assembled last night. It is really nice and big. There's room for all the kids to sit on it without having to fight for space.

Braxton slept on it last night and gave it the thumbs up.


+ posted by David

Day 12: Medicine Man

Now that Braxton is home, he has become the "Medicine Man." His cancer treatment includes a daily regimen of pills that would rival that of any geriatric patient.

Currently, Braxton's daily doses include the following:

1. Bactrim (twice a day on Mondays & Tuesdays) - prevents infection.

2. Fluconazole (twice a day) - prevents infection.

3. Prednisone (twice a day) - a steroid used to attack the cancer.

4. Zantac (twice a day) - to battle heartburn caused by all the other medications.

5. Zofran (as needed) - for nausea.

6. Miralax (as needed) - for constipation.

7. Senna (as needed) - for constipation.

8. GCSF (coming soon) - to help maintain white blood cell count.


+ posted by David

Gnarly Knee, Dude!

Day 11: Isolation (2008-03-24)

Today was a return to "normal" for the family. Beth and David went back to work. Bayley and Zoe, with Spring Break ended, went back to school. Emma went to pre-school. It was a return to normal for everybody except Braxton.

For Braxton, today was a day of isolation. While last week was more traumatic and scary, he was never alone. Either Beth or his Dad was with him every day. Today there's nothing traumatic happening and Braxton is by himself.

I felt very guilty leaving the house this morning. I know that being alone can be very hard and I hate to see Braxton have to be so isolated. The problem is that Beth and I need to save our sick days so that we can be with Braxton when he really needs us.

So for now, the big challenge for Braxton's recovery is dealing with isolation.

+ posted by David

Happy Easter!

Happy Easter! We spent the day with David's family and talked to Illinois relies on the phone. We woke up to more snow falling and a chilly day for Easter. Egg hunting, this morning, started around 8 and ended after, mostly, all of the eggs were found. Minus the 2 that the dogs ate, and 2 that we can't find we did pretty well. Braxton is still feeling fine, just bored. School starts back tomorrow and he will be trying to fill his time at home. Friend Brendan is on Spring Break ,this week, though so there may be some company after all.
posted by Beth

Pictures from Week 1

Braxton with New Catheter Port

Braxton, Zoe, and Bayley

Braxton with Superheroes

Day 9: First Homecoming (2008-03-22)

We were very excited to have Braxton return home from the hospital today. He was there long enough to see the parade of therapy dogs in the morning, and then he got to come home in the afternoon.

The house was ready for him. It was amazing how fast the volume increased once Braxton arrived home. All of the kids were back to being themselves – arguing, laughing, name-calling, pouting. The house really felt like a home again!!

Of course a lot had to happen to get the house ready for Braxton. Beth spent Friday evening cleaning his room, vacuuming, and doing laundry. She was on a mission to give Braxton a clean place to come home to.

Braxton, Bayley, and Zoe enjoyed leftover pizza for lunch (Thank you, Sue Wilberts!). Emma had her own fun at a “Super Birthday” for her pre-school friend Seraiah. We hung out for the afternoon while Braxton monitored the progress of his picks for the NCAA Tournament. He is doing incredibly well with his picks (24-8 after the first round). Go, Braxton!

Beth and I took some time to do some research for Braxton in the afternoon. We’ve decided it’s time to upgrade to high-speed internet so Braxton can do his school work more easily from home. We also explored the possibility of getting Braxton a lap-top computer that he could use at home and during his hospital stays.

Braxton had visitors in the evening. His friends Brendon and John stopped by and they hung out playing video games. For one day at least, life seemed pretty normal at our home in Arden Hills.

+ posted by David

March 22, Day 9: coming home!!

Braxton got to come home from the hospital 2 days early!! We are so happy to have him home for Easter. "The Floor", as I call it, is a great place. They try to make being hospitalized for yucky things, more fun. But...there's no place like home. :)
Braxton got home after lunch time and emmediately went to the basement to his gaming world. John and Brendan, friends, came over for the eveing to plat games and color eggs with us. It was nice to have some normalcy (sp?) after a weird week. Braxton did not watch any basketball, though, so he has to catch up on where he is with his bracket. He's still rooting for Kansas to take it all.

+ Beth

Day 8: hangin' around cont.

Hello everybody, it's me, Braxton. Last night was another night without much sleep. There were things beeping off and on, and me waking up every hour. Today was another day of sitting around. The family came to visit, and while they were here, Emily, the Child Family Life person, gave us a tour of the fifth floor. Emma and Zoe got to see the playroom, and Bayley and I got to see the Teen Room. It is a room for only people 13-17 years of age. At around 5:30, my friend Brendan, his brother Austin, and their mom and dad came to visit. I got a Star Wars transformers toy, and a Simon Trickster, hand held game. At first we were watching some basketball, but then Austin got bored and asked if he and I could play my NCAA Football game for PS2. Halfway threw the first quarter, Brendan got bored and wanted to play too, so he and Austin switched every quarter. When they had to go, the score was 17-16, Austin and Brendan. Through the first 28 games of the NCAA tournament, my grandpa and I are 21-7, while my dad is in last place with 19-9. I will talk to you all later.

day 7 hangin' around update

Chemo-therapy #1 arrives at 6:37. Braxton's getting hooked up... here we go.

Day 7: hangin' around

After a not too restful first night on "the floor" Braxton and I were up for the day by 7a.m. I forgot how early things get moving in the hospital. Doctor's rounds at 7, breakfast by 7:30, nurses taking more vitals by 7:45... Braxton is in good spirits and walking better with the leg that has 2 large incisions. He hauls his tangle of wires, tubes and a hydration bag (all on a metal stand with wheels) everywhere he goes. It's becoming a part of him. Not too much happens when you're just waiting for something to happen. But, Today is SUPER HERO DAY on the peds floor! Batman and Bat Girl leap into the doorway to invite Braxton to the SuperHero party in the afternoon. We took pics and they leaped out of the door, leaving behind a SuperHero balloon and gift bag. Next...2 folks came to visit with therapy dogs. Braxton enjoyed petting Sunny (a very large Briard sp?) and Cocoa the Yorkie who could do flippy tricks for Life cereal treats. His day got more exciting when Brad came to have male bonding time and watch NCAA basketball. Braxton filled out his bracket with his grandpa Bruce and changed some of the picks. Brax is 8-0 so far!! I went home to grab a shower, do some laundry and answer some calls and e-mails. After a quick trip to Target for soda and movie snacks, Bayley and I return to the U. for movie night. Zoe and Emma are staying home with David tonite.
We've been told that Brax will get to go home on saturday instead of monday. Good news! He can be home for Easter!
posted by Beth at 6:30 pm

Day 6: Surgery (2008-03-19)

Today was another good day on the road to recovery. Further tests revealed an improved prognosis for Braxton.


SURGERY

The day started with surgery. Braxton was supposed to arrive at the hospital at 6:30am with surgery scheduled for 8:30am. Since each of Braxton's two surgeries on his knee were delayed by several hours, it was decided that arriving at 7:00am should be early enough. So Braxton, Brad, and Beth left the house at 6:20am and got to the hospital at about 7:05am. Meanwhile the hospital woke up David at 6:55am with a call to see if Braxton was on his way.

No delays in surgery today. As soon as Braxton arrived he whisked away into prep for surgery.

The surgery went well. No complications. The catheter port was inserted successfully. And the doctors were able to extract some bone marrow and perform the spinal tap.


GOOD NEWS

The results of the bone marrow and spinal fluid tests were good. No cancer was found in either of these systems. With the lymphotic cancer all being localized to the blood stream in and around his left knee, Braxton's prognosis is very good. Doctors now believe that treatment will last only four months.

Yay!!


TREATMENT SCHEDULE

Beth and Brad had a team meeting with Braxton's doctors to learn about the schedule for Braxton's treatments. Although treatment is now expected to last for only four months, it is going to be a rough four months.

To begin with, each round of chemotherapy will be accompanied with a four to five day hospital stay. Braxton is scheduled to stay in the hospital through the Easter weekend and come home on Monday. Then doctors say that the second round of chemotherapy will begin almost right away. He is scheduled to return to the hospital next Thursday. Six days in the hospital, three days at home, and then another five days in the hospital.

The chemo will cause Braxton's hair to fall out. The doctors prefer to have the head shaved before this starts happening, so Braxton is scheduled to have his head shaved on Saturday.

Braxton's treatment will not only include chemotherapy, but will also include aggressive treatment with other drugs including some steroids. One of the side effects of all of these treatments is that Braxton's immune system will be compromised. This means that for the next four months he is to be kept away from large crowds and other places where he would encounter viruses. There will be no more school for Braxton this year. His 8th grade year is done (although he will still do the work at home with the assistance of a tutor).



FAMILY VISIT

Braxton felt good after surgery and the rest of the family was able to visit him tonight. Bayley and Zoe brought him some video games and movies and the three of them played Monopoly during the evening.


NCAA BRACKETS

Braxton is still a normal thirteen year-old boy and likes basketball. So with the help of his grandfather he filled out a bracket for the upcoming March Madness. Braxton is picking Kansas to go all the way.

Day 5: PET Scan (2008-03-18)

GOOD NEWS

Today brought good news for Braxton's prognosis. The doctors performed a PET Scan (although the original technician failed to scan the whole body and Braxton had to come back to the clinic to finish the procedure) and the results were encouraging.

According to the PET Scan, Braxton's cancer is not pervasive or diffuse. We have caught the cancer early and it is localized to his left leg.



BEING A KID

After everything was finished at the clinic, Brad took Braxton and his sisters, Bayley and Zoe, to see the movie "Horton Hears a Who." The movie got thumbs up from everyone.


+DH

------

Day 4: "Very Treatable" (2008-03-17)

Today was a good day for our family.

Two simple words helped restore hope: "Very Treatable."


We had a team meeting with Braxton's doctors this morning. Four of us went to this important first meeting to discuss the diagnosis: Braxton, Brad (his father), Beth (his mother), and David (his step-father). There was a full team of doctors present as well: Dr. B (treating physician), an Oncologist Fellow, and a Resident.

The meeting began with a discussion of the diagnosis. For a family who had spent the weekend under the dark cloud of fear and uncertainty, the news from this meeting was good. Very good.


DIAGNOSIS:

Braxton has “Diffuse Large B-Cell Lymphoma”

This is a type of non-Hodgkins lymphoma typically seen in pediatric patients.



WHAT WE KNOW:

What the medical community does NOT know is the cause of non-Hodgkins lymphoma. The doctors cannot tell us what generally causes this type of cancer, nor do they have any real insight as to why Braxton has it.

But there are two things that the medical community does know about non-Hodgkins lymphoma:

1. They understand how the disease behaves; and
2. They know how to treat it.

PROGNOSIS:

The prognosis for a patient diagnosed with Non-Hodgkins Lymphoma is good. It is highly likely that, with proper treatment, the cancer will be arrested within 6-12 months.

According to Dr. B, this type of cancer is "very treatable."


WHAT HAPPENS NEXT:

Braxton will be “staged” for full diagnosis of extent of lymphoma.

1. PET scan – will check body for highly active areas of glucose to identify where cancerous lymph nodes may reside.

2. Blood work - Braxton's blood will be checked to confirm cancer diagnosis and to check white and red cell counts.

3. Bone marrow aspiration & biopsy - the doctors will withdraw and biopsy some of Braxton's bone marrow to determine if cancer is present.

4. Spinal Tap - the doctors will withdraw some of Braxton's spinal fluid and test it for the presence of cancer.

SCHEDULE GOING FORWARD:

Braxton will return to the clinic tomorrow (Tuesday) to have the PET scan done and to have an echo-cardiogram. The PET scan will determine how pervasive the cancer is within Braxton's blood stream. The echo-cardiogram will make sure that Braxton is healthy enough for surgery and ensuing treatment.

On Wednesday, Braxton will check-in to the hospital for surgery. The doctors will insert a catheter-port under the skin on his chest. This port will be used for chemo treatments. While the doctors have Braxton in surgery, they will also perform the bone marrow aspiration and the spinal tap.

Braxton will stay in the hospital and doctors will administer the first round of chemotherapy. He is expected to have to stay in the hospital until Monday of next week.


+DH

Days 2-3: Fear & Uncertainty (2008-03-16)

Saturday and Sunday were days of fear and uncertainty. We knew very little. Dr. K had mentioned something about diffuse b-cell lymphoma, but that meant very little to us. We did a little research on the internet, but kept coming across phrases like “aggressive,” “fast-moving,” and “pervasive.” So we stopped looking and started waiting. There was nothing we could do. Nothing to do but wait.

“Braxton has cancer.”

Nothing to do but wait.

The days of fear and uncertainty were very difficult. We knew little. We feared much. How do you prepare for the worst when you’re dealing with the life of a loved one? Life’s lessons may lead you to the place where you can face a terminal illness in yourself, but nothing can prepare you to watch your child confront such possibilities.

As parents, our weekend was spent divided between acting as if nothing had changed and making phone calls to friends and family. Talking with friends and family was frustrating because we knew so little. Every phone call served only to increase the sense of fear and uncertainty which already overwhelmed us.

And there was also the issue of telling Braxton. How do you tell a thirteen year-old he has cancer? How much do you tell him? Especially when you still know so little yourself?

I think the weekend was most agonizing for Beth. She was devastated by the news on Friday, crushed by the weight of uncertainty, and humbled by the prospect of telling Braxton. By the time Sunday arrived, her suffering was reflected by dark rings under her eyes. In the entire time I have known her, I have never seen her so sad.

We did not tell Braxton until Sunday morning. Beth wanted him to have a worry-free day of fun before having to deal with the knowledge of cancer. So on Saturday Beth took Braxton and Zoe out to lunch and then to the movie “College Road Trip.” She would have taken Bayley too, but Bayley had a speech meet.

When the time actually came to tell Braxton on Sunday, Beth did very well. She had been crying most of the weekend and was really worried she would break down in front of Braxton, but she didn’t. She was very calm as she told Braxton that he had cancer. And she did not burden him with the same fear and uncertainties that we had struggled with over the weekend. She simply told him that cancer had been found in the tissue that had been removed from his leg and that we would be taking him to the clinic for some tests to see if any cancer had been left behind.

We shared the news with Braxton in the morning and then his dad came and took him out to lunch and a movie in the afternoon. While fear and uncertainty stalked us at home, Braxton was allowed to have some normal kid fun before facing the full diagnosis on Monday.

+ DH

Day 1: Journey Begins (2008-03-14)

Today is the day that changed our family. Beth received a phone call this afternoon from Dr. K informing us that Braxton had been diagnosed with cancer.

Some background: Braxton has been having some on-going issues with his left knee, but nothing had suggested that these issues were cancer related. Braxton is a thirteen year old boy who enjoys playing football and baseball, enjoys video games and television, and rough-housing with his sisters.

About two years ago Braxton injured his knee playing football. During the next football season, he complained intermittently about more pain in his knee. Finally in October of 2007, the pain was too great to ignore.

We took Braxton to his family doctor who took some x-rays of his leg and knee. These x-rays showed some tissue growth behind his right knee. Braxton was referred to a specialist who did some more testing, but had no explanation for the tissue growth. Braxton had the tissue surgically removed and biopsies came back negative. At that time the best guess as to a diagnosis was osteonecrosis, a condition where a bone stops growing. The bone is considered dead.

The first course of treatment for osteonecrosis was to do nothing. Braxton was put on crutches and directed to keep weight off the knee for 8 weeks. The goal was to see if the bone would start regenerating on its own.

After a period of four months, Braxton had an MRI on his knee to see if there was any progress. Instead of positive growth, the MRI showed a new mass of tissue behind the knee. Another surgery was scheduled for early March, 2008.

The surgery went well and a large glob of soft viscous tissue was removed from behind the knee. Doctor ______ said that nothing about the tissue appeared cancerous, but that it would be sent out for biopsy.

Then came our fateful Friday the 14^th. Beth got the phone call late in the afternoon. She was in tears when David arrived home from work. “Dr. K called. Braxton has cancer.”

Three words.

“Braxton has cancer.”

With these terrifying words our journey begins.

+ DH