Tuesday, August 29, 2006

August 29th-September 6th: Chemo Course #2

TUESDAY, AUGUST 29, 2006 08:40 PM, PDT

“The doctors let me start to eat regular food again today. I had raspberries, hot cocoa, animal crackers, sun chips, banana bread, cup-o-noodle, french toast, a chocolate malt from Loard's and Annie's white bean & chicken chile.

My dad took lab samples of blood from my Broviac and didn't mess up too bad. The nurse watched.” Keith

Parent's note:

Keith did really well again today. More exercises out of bed and for a while was completely unplugged from his IV tower. Ben, a friend and neighbor of Keith told a knock-knock joke that made Keith laugh that goes something like this....'who's there....SPELL....spell who?....W...H...O

It was nice to see Keith happy again. And all that food he ate... Still the nurses want him to eat more before they will take out the feeding tube.




WEDNESDAY, AUGUST 30, 2006 10:12 PM, PDT

“I didn’t really do anything new today, but I did lots more of everything. I ate more and I walked and exercised more. I really liked the video made by all my friends at school, but I’m sorry to say some of those jokes are really sad! Oh, and it looks like I am going to start getting homework soon so I guess I won’t be getting off too easy. The nurses aren’t really paying much attention to me anymore so my parents say that means I must be getting better.”

Parent’s Note:

Maybe it’s the constant Food Network programs that he tunes into, but Keith is really hungry now and since has been given carte blanche to eat whatever he wants by the doctors he is taking advantage of it. Today it was sushi, followed by more white bean & chicken chili with a request for homemade corn bread and some chocolate instant breakfast to wash it down. Yum. Kind’a eclectic but hey, we’re in California

Now that Keith is feeling better, he has enjoyed having a few of his friends stop by. Also, there is an art program here in the unit and Keith was able to start a ceramic painting project. He was into it for a while, but then the odors from the paints got to him so it’s on temporary hold for now.



Keith received this great banner signed by most of the roster of the Michigan Wolverines and has it proudly displayed on the wall opposite his bed, and the video of Keith’s classmates was a huge hit and he smiled and laughed at the silliness of it all. I could tell he wished he was there though… (thanks Julie, Clare and Cynthia for making it happen!).


I'm not sure we can even begin to thank everyone… so to all who have sent Keith well wishes, cards or fun things and to all of our friends who have helped Josie, Scott and me cope over the last few weeks with nourishment of the body and mind we hope you understand how much we appreciate all of your efforts. It is almost impossible to formally thank everyone but we will do our best. Please understand how much we are grateful for your acts of kindness in the event we are unintentionally silent.




THURSDAY, AUGUST 31, 2006 10:08 PM, PDT

“I played six rounds of Fluxx with Scott when he visited after school. It's a fun card game. The doctors think I am doing so well that I can start the next chemo pretty soon.” Keith

Parent's Note:

Keith's white blood cell count has jumped to 9,500 (normal is 5,000 to 10,000). On 8/22 it was less than 100 ! That means that despite his rendezvous with the ICU earlier, he is still on track for his second course of chemotherapy and it sounds like it might start as early as Sunday. They don't cut you any slack around here at CHO!




FRIDAY, SEPTEMBER 01, 2006 09:34 PM, PDT

“Today I was able to leave my room and go down the elevator and outside into the garden court of the Hospital (I did it twice!). They have a Game Cube on wheels here on my floor so we rolled it in my room and I played Monkey Balls and Pikmin for a while. Kaiser and Trevor visited me today and that was great. Also, my hair is really starting to fall out so I look kinda’ brutal.” Keith


Parent’s Note:

Keith was exhausted but so happy to get outside and to see a couple of his friends. He looks like himself again (except for the thinning hair) and it’s great to see him smile and laugh.

Looks like we are indeed on for course #2 beginning on Sunday but the really good news is that Keith may get to go home sometime late next week if all goes well!

Too late for the Mohawk now – if you try to comb his hair it simply falls out… Check out the “Photos” tab and click on the ‘View Larger Image’ link on the last image (the one that looks blank). You should see an animation of what Keith might look like in a few days….




SATURDAY, SEPTEMBER 02, 2006 09:19 PM, PDT

Today was my last ‘free’ day because chemo starts again tomorrow. Oh and Mrs. Howard stopped by my room to tell me about what’s going on in 5th grade. Now I have all the textbooks that are being used in class so I can try to keep up. Thanks to all my 5th grade friends that sent me get well cards from school – they’re great.

Parent’s Note:

A relatively quiet day as things go around here. It looks like they will start the next 72 hour chemo course tomorrow evening with the usual lab work done in the morning to make sure all systems are go.

Go Blue! Michigan notched its first win on their march to the national championship……




SUNDAY, SEPTEMBER 03, 2006 10:58 PM, PDT

Parent's Note:

Keith started his second course of chemo around 7pm after a quiet day interspersed with regular visits by the medical staff to make sure all of his stats met spec so to speak. In addition to the 3 chemotherapy drugs that he is receiving he is also being given an alternating course of 5 drugs to help control nausea. He is also recieving another drug to protect his bladder as the chemo drugs are so toxic. It is important that he stay well hydrated, so on top of all the other lines feeding into his Broviac, he is also receiving lots of fluids to keep things moving through his body efficiently. He is definitely plugged in again.

He has a great attitude though, and lots of inner strength. I don't think he ever mentioned he was scared or that he didn't want the chemo or that he didn't want to get sick to his stomach again. His only request was that he not wind up in the ICU this time around.

I think we all feel the same way about that...

MONDAY, SEPTEMBER 04, 2006 09:21 PM, PDT

Parent’s Note:

We have had our fingers crossed hoping that this round of chemo would be easier for Keith - and so far so good. After one day on-line he is still feeling ok – no nausea, cheerful, comfortable and still eating well (although we’re scratching our heads at his odd craving for the cafeteria chili…)

We did the usual daily lab draw from Keith’s Broviac. After the draw, the protocol requires the line to be flushed with saline and then Heparin to prevent clotting. Apparently while the line is being flushed with saline, Keith has a strong taste sensation. He says it tastes like green beans while sucking on a penny (why couldn’t it be chocolate or something pleasant?). So clever as we are, we’ve come up with a solution; Keith pops a breath mint while we flush and everyone’s happy.

Keith spent a mostly quiet day in bed with Food Network providing most of the entertainment although we did manage to drag the IV tower into the shower with him to freshen him up a bit. Perhaps the biggest event of the day was Keith loosened a molar while chomping on some pretzels and the nurse came in and yanked it out. Later on she said it was the first time she ever had to pull a tooth and it was the most exciting thing she had done in quite a while! The things we do to keep the staff entertained…

Lastly, Kirby (Keith’s cat) just turned 9. Since Keith was not able to do so in person, he asked Scott to wish Kirby a happy birthday for him.

TUESDAY, SEPTEMBER 05, 2006 10:01 PM, PDT

Parent’s Note:

Keith has been feeling the effects of the chemo treatment today. His appetite has dropped off and the medications are making him feel rotten as one would expect. He has been sick to his stomach a few times today, but compared to the first course of chemo it seems like he is tolerating this treatment much better.

Having said that, it was about 60 hours into his first course when he began to have breathing difficulty that eventually led to a scary visit to the ICU. As of this entry he is about 51 hours into his treatment and so we will be monitoring how he feels during the night and into the morning very carefully. If we can just get through this course without any major hitches Keith should be able to head home later this week for the first time since he was admitted on August 9th.

Kirby will be so happy to see Keith and visa versa.




WEDNESDAY, SEPTEMBER 06, 2006 11:01 PM, PDT

“The first thing I want to do when I get home is see Kirby.”




Parent’s Note:

We’ve made it! At 7:15pm the chemo drip was turned off. Since yesterday afternoon Keith has not been sick to his stomach at all and his vitals have been rock solid. They say the second course is usually easier than the first and that seems to be the case. Keith even got out of bed this afternoon and was bouncing a ball down the hallway with the physical therapist.

So what does all this mean? If all goes according to plan sometime on Thursday afternoon we will be packing our bags and heading for home!

On the day Keith was admitted we were given a fat binder full of instructions of what to do and what not to do to care for Keith and his special medical needs. As Josie will attest I’ve never been very good at “reading the manual” but I’ll make an exception for Keith. While the details of how we will care for Keith at home are still somewhat fuzzy, we’re looking forward to figuring it out. The nurses have been working with us for some time to make us competent once we are home in dealing with administering medication, drawing labs, changing dressings, knowing when and when not to call the oncology department, and making sure that there is always a Broviac clamp at the ready. I have to confess, we’ve gotten a bit used to pressing that little red call button at his bedside when a pump alarm goes off in the middle of the night. There won’t be any RN’s to rush to his side now - we’re it for a while.

Thankfully to soften the transition from hospital to home we can count on Alton Brown (Keith’s favorite) and the rest of the Food Network personalities to continue to provide nourishing entertainment…and we get better reception to boot.

So it looks like we’ve won the battle for now, yet the fight as they say is far from over. We’ll be seeing our friends on the 5th floor many more times. Still we’ll celebrate the victories at every chance we’re given. I suppose the irony of life’s hardships is their blunt way re-focusing one’s values. At least for me even mundane routines are somehow elevated to special status when it involves time with family. Life’s a fleeting moment and life’s a true gift.

Wednesday, August 23, 2006

August 23rd-28th: Beads of Courage

WEDNESDAY, AUGUST 23, 2006 09:01 PM, PDT

Parent's Note:

A quick note tonight while I still have laptop battery. I am sitting next to Keith; awake, mostly comfortable and minus his breathing tube!. He was taken off the respirator around 3:30 this afternoon. Keith did a great job again helping the doctors today and was brave as usual. He spoke a few soft words along with lots of gestures asking to fix this or move that. As far as I am concerned, I'll do whatever he wants.

He still looks like a science experiment with tubes and wires going here and there but even these are slowly disappearing. His medications have been reduced again today and if all goes well we may be back upstairs in the oncology suite in the next day or two.




THURSDAY, AUGUST 24, 2006 10:12 PM, PDT

Parent’s Note:

Keith is weak and very exhausted but he continues to exceed the doctor’s expectations for recovery. He had three more catheters removed today! (that leaves only his Broviac line, one feeding tube, a pulse / oxygen sensor, 4 connector pads for his vital stats monitor, a nasal oxygen cannula and a bunch of bandages as reminders of what he has been through). It is actually possible to recognize him again!

A physical therapist met with Keith today to work on trying to get his body moving again and he now has a bunch of little exercises to work on. Compared to a Park Pool swim team workout this would seem like a snap, but for Keith now just breathing deeply, lifting his arm and even swallowing are each huge efforts.

The plan is still holding that he should be able to leave the ICU sometime on Friday and return to 5th floor oncology unit. The friendly nurses upstairs can’t wait to have Keith back under their watch again.

As far as Courage Beads go…

Soon Keith should feel good enough to sit with Heather and add up all of the beads he has earned over the last week and a half. Seems to me all strung together he must have earned enough to rig a ship.

We’ll see…




FRIDAY, AUGUST 25, 2006 06:59 PM, PDT

Parent's Note:

A great day. Keith is using his voice again and is breathing without any supplemental oxygen. He is also regaining some strength in his muscles that even surprised the physical therapist. If it weren't for his IV nutrition he would be totally 'unplugged'.

We are still in the ICU today, but not because Keith isn't ready to leave - it's just that the nursing staff on the 5th floor isn't able to take another patient right now. It looks like we'll make the move on Saturday sometime.

It's wonderful to have our buddy back...




SATURDAY, AUGUST 26, 2006 09:37 PM, PDT

Parent's Note:

As planned Keith has changed addresses again and has returned upstairs. His new room is much more accommodating for overnight parents than his previous quarters in the ICU so we are thankful.

We are also thankful that we can once again resume the original game plan of continuing his treatments and beating his cancer.

Keith continues to get stronger even as his hair begins to fall out. The fog of the last week seems to have lifted and sadly Keith has come to realize all over again that his cure will be a long ordeal. He really misses his cat and was sad that his grandmother Annie needs to go back home. On the bright side though, Keith's brother Scott visited yesterday and today which cheered him up quite a bit as did seeing the 'M Go Keith' banner signed by many of the U of M football team that his Aunt Nancy and Uncle John made happen.

Of course this website and all of the guestbook entries will become more and more important for him to stay in touch with his friends and family, especially as he is now beginning to be able to read the entries and understand how much support and encouragement he has beyond the walls of his room.

Heather stopped by yesterday to hand out a few more 'Beads of Courage' There had been so many procedures done over the last week or so that a nurses report will be needed to account for all of the beads he has actually earned, but she let him choose five super special courage beads for what he has just endured. We strung them up and he seemed proud and pleased.

I'm hoping that maybe tomorrow Keith can begin to use his own voice again to fill these journal entries.

OK, I'll help a little...




SUNDAY, AUGUST 27, 2006 10:26 PM, PDT

“I was able to stand up and walk a little today even though my legs are kind of weak. It felt good to get out of bed.” Keith

Parent's Note:

Keith was able to start eating a bit as well - clear liquids and such - on his way to having his feeding tube removed. He is doing so well and feeling very comfortable now without a lot of medication.

His white blood cell and platelet counts are up which is great news.

Tomorrow we'll find out what's in store for the next week as the doctors huddle and refine the game plan.




MONDAY, AUGUST 28, 2006 09:48 PM, PDT

“My mom and the physical therapist helped me walk out of my room to the end of the hall and back. I was pretty tired after that but I was glad I did it. I also got to eat some ice cream and fresh raspberries today.” Keith


Parent's Note:

A great accomplishment for Keith ... I wish I could have seen it - almost like seeing your child take his first steps again. The physical therapist and Josie teamed up to help Keith - one supporting Keith, the other pushing his IV tower alongside.

Keith got the remaining beads of courage owed to him and he now has a whopping 90 of them not including his name beads! http://www.beadsofcourage.net/

I think we are going to need to start another strand; there's not much room left on his current one.



BEADS OF COURAGE COLOR GUIDE:

Bone Marrow Aspirate/Biopsy = Beige
Course of Chemotherapy = White
Central Line/Port/PICC Line Inserstion & Removal = Orange
Clinic Visit = Blue
Emergency/Ambulance/Unusual Occurence = Magenta
Hair Loss/Thinning = Brown
Isolation/Fever/Neutropenia = Lime
Lumbar Puncture = Tortoise
Morphine/Dopamine/PCA Infusions = Purple
Pokes(IV Starts, Blood Draws, IM injections, Port Access) = Silver/Black
Radiation Treatments = Glow in the Dark
Tests/Scans(EEG, ECG, ECHO, MRI, CT, Bone Scan, Gallium..) = Light Green
Transfusions = Red
Tube Insertions(Catheter, Chest, NG, Foley) = Aqua
Sleep over at Hospital/Patient Admission = Magic Bead
Stem Cell Harvest/Dialysis/TPN = Dark Green
Surgery = Silver
Transfer to the PICU = Square Heart

MILESTONE BEAD COLORS

Special Accomplishments and Recognition = Special Selection
Bone Marrow Transplant = Fimo or Glass Selection


COMPLETION OF TREATMENT = PURPLE HEART

Tuesday, August 22, 2006

August 16th-22nd: Bad to Worse: PICU



WEDNESDAY, AUGUST 16, 2006 05:45 PM, PDT

Parent's Note:

Despite having completed his first course of chemo, this has not been a good day. Keith was moved from his room in the hematology/oncology unit to the pediatric ICU this afternoon. His oxygen saturation levels dropped throughout the night and by mid day the acute care nurses were unable to maintain 02 levels where they needed to be.

It is unclear whether he is suffering from tumor lysis or some form of opportunistic viris. He has been intubated with the hope that this will allow his lungs to recover over the next few days.

As I write this journal entry I do not yet know what news night will bring. They say that one should expect setbacks over the course of treatment but I think Keith is due for some good news for a change.

Hang in there Keith!




THURSDAY, AUGUST 17, 2006 10:10 PM, PDT

Parent's Note:

I'm looking forward to when Keith can begin to write these journal entries in his own voice. Unfortunately, this was another very difficult day but ended on a positive note. Keith has been listed in critical condition but is fighting so hard to stay alive.

He has been so sick that he has not been able to read any of the guestbook entries himself. So today we printed all 100 entries so far and read them to him at his bedside between all of the ICU nurses. Even though he was asleep, I know he could hear all of your encouraging words. I am sure this helped him feel better and made him want to fight harder to get well again.

The doctors are encouraged that he seems stabilized now and we are hoping that he will begin to improve. All of your thoughts and prayers are having a positive effect.




FRIDAY, AUGUST 18, 2006 08:24 PM, PDT

Parent's Note:

Finally some good news! In the past 24 hours Keith has rallied and finally seems to be recovering from the acute respiratory distress he suffered as the result of the chemotherapy. It is still not clear what the underlying cause is, but between the positive thoughts, the amazing machinery hooked up to him and a great medical team he is improving.

As a side note, Kirby (Keith's cat) had a vet appointment yesterday and he was indeed a fat cat, weighing in at 18 pounds. He is on a diet now...




SATURDAY, AUGUST 19, 2006 08:03 PM, PDT

Parent’s Note:

Another day of gradual, steady improvement for Keith. He remains in critical condition but the doctors are pleased by the way he is responding to treatment. His lungs are finally starting to clear and it is possible that Keith may be taken off the oscillating ventilator sometime on Sunday. If so, he will most likely be placed onto another type of mechanical ventilator and then gradually weaned from it over time. He is also on CCRT (renal replacement therapy), a type of dialysis that his helping him clear toxins and excess fluids from his body. Without either of these treatments it is unlikely he would have survived the last couple of days. We are so looking forward to when Keith can finally breathe for himself again and be removed from the heavy sedation he is currently under. Besides, he wants to see his hair fall out.

The ICU staff is planning to move Keith into an isolation room where he will be less likely to be exposed to germs. As the chemotherapy treatment will soon compromise his immune system, he will not be able to fight off the usual bugs we are all exposed to.

We continue to be so touched by all of the acts of kindness and concern for Keith and our family, but especially the gesture by the incredible swimmers and coaches from Park Pool who dedicated their swims in the County meet today for Keith. From what I read from Erin and Molly’s posts, the boys and girls relays swam really fast and Keith will be so happy to learn that “Go Keith!” was written on their backs!




SUNDAY, AUGUST 20, 2006 07:54 PM, PDT

Parent’s Note:

Keith has been on life support now for 4 long days. Progress continues, but the doctors are being very careful not to rush his recovery. It has been a rather uneventful day (relatively speaking) which makes the doctors happy – “boring is good” is a phrase we’ve heard more than once from the medical team. It now seems like he will continue to remain in intensive care for at least another week and on life support for much if not all of that time until he can be slowly weaned completely from the machines his body depends on. Baby steps.

We were naïve in thinking that his recovery would be as quick as his decline. Sadly, when he does recover, it will be time for his next round of chemotherapy to begin. He'll need to be strong.

It’s becoming clear to us that he probably won’t be able to come home until after his second course of chemo – at best several weeks from now.

This disease is so cruel.




MONDAY, AUGUST 21, 2006 09:48 PM, PDT

Parent’s Note:

We are new to this, but are quickly starting to get in synch with standard hospital routine. Weekend days are all about stabilizing and maintaining patients while weekdays, especially Mondays, are for making plans and getting things done. Today there was much more activity as evidenced by the full contingent of attending physicians, fellows, residents, nurses and specialists that gathered around Keith’s bed for about 20 minutes discussing his stats and planning the next steps of his treatment. We were relieved to see mostly smiles on the faces of his medical team as they reviewed his progress.

His lungs while not fully healed, are clearing and doing much more work to oxygenate his blood. It was decided he was ready to be removed from the oscillating ventilator (300 small breaths per minute) and placed on a standard ventilator that breathes much more naturally. Toward the end of the day the settings on this were lowered again and eventually he should be able to be removed from this machine altogether and breathe again for himself.

Tomorrow is a big day. The plan is to remove Keith from his CCRT (renal therapy) machine and roll him down to the hall to have another CAT scan. When that is finished he will be re-located into one of the isolation rooms in the ICU that will protect him from other patient’s germs while he is immunocompromised.

The really big news today was Keith got a bath of sorts and had is hair washed for the first time since the OMPA swim meet. We interpret this to mean is that the nursing staff was looking for something to do – a welcome change from recent events. We laughed that maybe this was a good time to give Keith the Mohawk haircut he has wanted for some time since it should all fall out in a few days anyway.




TUESDAY, AUGUST 22, 2006 10:01 PM, PDT

Parent’s Note:

This was a big day indeed and Keith made small but significant steps toward recovery from his unexpected respiratory crisis. He was disconnected from his CCRT machine and around 10 am he was taken on his bed (along with all of his electronic monitors and pumps) to have another CAT scan. When he returned to the ICU about an hour later he was placed into an isolation room and the doctors decided to keep him off the CCRT and try letting his kidneys resume their job again. Apparently they are working fine – yea!

The biggest news by far is something we were not fully prepared for. The heavy medication that was keeping Keith asleep and comfortable was lightened and he began to respond with head nods and arm wiggles to questions. We have our son back again and it is a true gift. He is indeed such a fighter.

Fewer stern faces and many more smiles from the doctors today. It seems he is recovering faster than even they had hoped for. But even in our joy we must remind ourselves not to forget the larger battle. It may sound odd, but we are looking forward to Keith returning to the hematology / oncology floor where he can focus all of his energy toward resuming his battling with cancer again. The wonderful nurses on the 5th floor are looking forward to having him back again as we all are.

Josie is spending the night with Keith. When I asked him earlier in the day if he wanted a Mohawk he shook his head ‘no’. Maybe he will change his mind…

The doctors have asked us to remind our friends that visiting Keith is not good for him right now because he needs to be kept away from any possible exposure to germs. Still the support our family has received from our community of friends through messages and offers of help is unbelievable. Thanks so much. Oh, there is a bulletin board in Keith’s room again, so when he wakes all of your cards will be there for him.

Sunday, August 13, 2006

August 13th-15th: Chemo Course #1



SUNDAY, AUGUST 13, 2006 09:00 AM, PDT

9:00 AM I started my first round of chemotherapy today. It doesn't hurt because the medicine is dripped into my central line.

My uncle Chris arrived from Seattle today. I like it when I can have visitors in my room, especially my brother Scott.

Parent's Note:

Keith is receiving high dose induction conforming generally to the N7 protocol. He will receive as many as 4-7 rounds of chemotherapy depending on his responses. The chemo is administered over a 72 hour period after which he will recover for about three weeks and then start the next course. After the third course he will undergo a bone marrow harvest, where stem cells are removed from his blood and saved for later re-introduction.

After the fourth course, he will have surgery.




MONDAY, AUGUST 14, 2006 09:00 AM, PDT

Today is the second day of my first course of chemotherapy. The sores from my surgery are less painful today but I am starting to feel sick to my stomach from the chemo.

Parent's note:

Today was the first time we (actually Josie) drew blood samples from Keith's Broviac under staff direction, a procedure that will have to be performed many times by us when Keith is at home. I guess if Keith can be brave, we can too.




TUESDAY, AUGUST 15, 2006 05:11 PM, PDT

I'm on my third and final day of chemo (at least for now). I really don't feel well at all and I'm so tired that I have been sleeping a lot.

Parent's note:

We are overwhelmed by all of the notes of encouragement for Keith that have been posted in the last day. It is hard to describe how important is to us to know that there is a community of friends and family that care so much for Keith. Thank you for all of the support.

We are told that Keith will continue to feel lousy for a couple more days until the chemotherapy wears off.

Saturday, August 12, 2006

August 6th-12th: Learning That I Have Cancer



SUNDAY, AUGUST 06, 2006 01:32 PM, PDT

I swam my final event at OMPA - 50 yards butterfly - in my best time yet even though I felt kind of tired.




TUESDAY, AUGUST 08, 2006 01:25 PM, PDT

After a check-up with my doctor earlier in the day I went to have a blood test done in Orinda.




WEDNESDAY, AUGUST 09, 2006 11:00 AM, CDT

We were told to go to Children's Hospital Oakland. I was admitted to the hospital and they did a bunch of tests on me. I had a CAT scan and they put an IV in my arm. It was pretty scary and I didn't want to be there. The doctors talked with my parents for a long time outside of my room in the ER.

Later in the day I was taken to a room in the hematology / oncology unit on the 5th floor. I noticed most of the kids here didn't have any hair. I had several blood transfusions to raise my hemoglobin and platelet count.




THURSDAY, AUGUST 10, 2006 09:00 AM, PDT

More tests.

I am taken to the nuclear medicine department to have a kidney scan. I have to wear a mask on my mouth when I leave my room so that I don't pick up any germs.

Around 3:00 in the afternoon I left my room again, this time on a gurney headed for the operating room. I don't really remember very much after that.

Parent's note:

The surgery involved a bone marrow aspiration from his pelvis area, a biopsy of a lymph node in his neck and the placement of a central line in his chest called a Broviac catheter. This port will let the doctors draw blood and give medication without having to poke Keith's arm anymore.




FRIDAY, AUGUST 11, 2006 09:00 AM, PDT

“Still more tests. Back in the wheelchair to go have an ultrasound heart scan and a hearing test. My grandparents Annie and Don and my uncle John arrived today from Michigan and I was really glad to see them.

I already knew that I had a couple of tumors in my body, but this was the day I learned that I have cancer. I was pretty scared to hear this. But I also learned that I can be cured with medication and other treatments. I learned that my hair will fall out because the medicine is so strong.

I wanted to get started right away. I also wanted to see my hair fall out so that I would know that the medicine is working. I am trying hard to be brave.

Heather, a social worker here at the hospital enrolled me in the 'Beads of Courage' program. I get a new bead for every act of bravery. So far I have earned 13 beads.” Keith


Parent's note:

Keith has been diagnosed with Stage 4 neuroblastoma and will begin a regimen of chemotherapy, stem cell harvesting, surgery, bone marrow transplant and probably radiation.




SATURDAY, AUGUST 12, 2006 08:00 AM, PDT

“The dressing to my Broviac was replaced twice today which hurt because the bandages were hard to get off. Also, the bandages where my bone marrow aspirations were taken from my back were also removed and that really hurt.”

Parent's note:

The nurses added another pump and 3 more lines leading to Keith's central line in preparation for the onset of chemotherapy.