Day 36-39...

this last week went very smooth.....God news!

We sailed through each day, I received only one type of chemo this week and my labs/blood counts held up and I didn't need any blood products. 

Monday, I go back to the 2 other drugs for two weeks and as of now I have to go only on Monday and Thursday. Monday I will get the chemo that is injected in my thighs and another IV chemo. Of course all of this depends on my labs that will be drawn first thing Monday.

Here are my labs from Thursday...

WBC: 2.6

RBC: 2.79

ANC: 1.9

Hemoglobin: 9.0

Platelet: 76

at times is seems like this treatment is moving so slow and then when I realize that I have 90 days less of treatment and I am feeling pretty good most days and just have to keep hydrated and rest when my body says rest.

The next course of treatment is called "Standard Maintenance I" and if all of my labs are good, I will start right away on day 57. This course will included 3 day hospital stays every 2 week for 8 weeks.

thank you for being on this journey with me! We still have bracelets, if any of you wants one. Just send us your name and address via email or a comment.

until next time, God Bless...

day 29-32...

let's just say.....it went really really really smooth and I my only side effect is lack of energy.

Monday, Day 29... check in at 8am had the chemo infusion in my ommaya port and had NO nausea or sickness! I did need some blood builders and also 2 other kinds of IV chemo and we left the building at at 4:30.

Tuesday, Day 30...checked in at 9am, got one round of chemo and left the building at 10:30am Ü

Wednesday, Day 31...checked in at 9am, got one round of chemo and left the building at 11am Ü

Thursday, Day 32...checked in at 8am, got one round of chemo and left the building at 10:15am Ü

Next week only one round of chemo Monday thru Thursday. I am done with the chemo in my ommaya port for this 56 day Consolidation.  Yeah!

It was a great week! I know from the last round of this schedule that all of the chemo caught up with me during the second week. I do have to say that I feel stronger each week. My blood counts are showing that also. Here they are as of today...

WBC: 1.8

RBC: 3.75

ANC: 1.9

Hemoglobin: 12.0

Platelet: 159

So, as my mom would say, one less week of treatment. Thanks to all of you for your continued prayers!  

Stay in touch, if you have time and are healthy, let's get together.

Have a great weekend Ü

day 29 postponed for one week...

8AM...arrived at COH and had me labs drawn. I was coming in prepared to have the round of chemo into my ommaya port that I missed on day 1, 2 different IV chemos and to start back on the pill form of chemo for the next 2 weeks.

10:55AM...we find out that my white blood count is not high enough to get ANY chemo today or this week. This week schedule will be postponed until next week in order to allow my white blood count to recover and that I will be getting 2 different blood products is all. I will then also come back here on Thursday, for another blood test and get whatever blood products needed.

2:30PM...on my way home.

this is when my dad would say, "blessed are the flexible, for they shall not break", thanks dad!

After my really rough weekend and day 21 and after a ultrasound and CT scan of my abdomen, the only possibility to the pain in that area is a slight infection in my large intestine and this is because with all of the antibiotics and chemo I have had, it causes the good stuff to be striped out of my system and then it cause an infection which of course is treated with more antibiotics? Huh? I am now on 3 different antibiotics, one to protect me from bacteria, one to protect me from possible cold type infections and now this one to help heal the infection that all of these medications and chemos are causing. I am thankful that mom is keeping me on tract with what pill to take when.

Over all I am feeling pretty good, the only thing that I now deal with is some aching in my bones. This is because the bone marrow is working hard at rebuilding my blood that it actually causes my bones to ache. The best thing for this is water, water and more water. I have been able to take short trips out and about, I am just having to listen to my body when it says either stop, sit, lay down or sleep.

That's it for today, I will enjoy having the week off, let's get together.

oh, here are my numbers...

WBC: 1.4

RBC: 3.55

ANC:  .4

Hemoglobin: 10.9

Platelet: 231

saturday night, day 20

being completely honest...I sat on the couch most of the day on Saturday, watching tv. The chemo was kicking my butt, I was tired. Around 4pm or so I noticed when I stood up that my back was stiff and sore. As the night went on it became more painful and got to the point that I couldn't find a comfortable position. 11pm I decided to go to bed and hoped that laying down would help. Wrong! nothing helped, medication, heating pad, knees bent, extra pillows, willing myself to relax and at 3:30a we were in the car on the way to the COH. 

By the time we arrived I could only stand and the pain could be described as cramping or spasms that would come and go and made it really hard to get a breath. This really felt like the pain that I had in my stomach but now it was in my back, Well, the first dose of medication lasted about 20 minutes and at least allowed me to sit in the bed. The second dose lasted about 1 hour and to lay a little more flat and then a third dose was needed in order to give me complete relief and allow me to get to sleep and I was going to be admitted for observation and so that my doctors could try to get to the cause and Monday was chemo day.

Monday was spent having testing and about 2pm my doctor came in to give me the chemo into my port and I was pre-medicated in a comfortable and quiet room and as she prepared for the procedure I was really hopeful and just as she finished, I had the same violent reaction as I did last week. I did get really sick again and once it passed I just wanted to climb in the bed and sleep. I still needed 3 different kind of blood transfusions, as I did in the hospital and one more round of IV chemo. If there is anything good to say, it would be that as fast as it comes on, it passes just as fast. I was able to enjoy a Baja Fresh burrito for dinner and settled in for another night as an inpatient.

So after, multiple doses of pain medication, a chest xray, 2 urine tests, multiple blood tests, an xray of my back and having my stitches removed from my ommaya port surgery. Diagnosis: unknown. Best guess: the pain was caused from a extreme acceleration of the bone marrow producing blood. I guess this is quite common and others have ended up at COH feeling similar pain. 

At 3:45p on Tuesday, I was on my way home.

Here are my latest numbers: (remember, next week I start back on the 4 day routine of chemo. So enjoy and celebrate with me. These numbers look very hopeful)

WBC: 1.5

RBC: 3.21

Hemoglobin: 9.6

Platelet: 238

Glucose: 100

Thanks for checking in. Keep praying and keep in touch...

Day 19 of Consolidation,,,

this out-patient schedule is much more demanding than being in-patient. I find it very interesting that both words end with patient....

We've spent over 45 hours at COH for 10 appointments. Here was my schedule for the first 14 days.

Day 1 - Labs & 4 rounds of Chemo

Day 2 - 2 rounds of Chemo

Day 3 - 2 rounds of Chemo

Day 4 - 2 rounds of Chemo

Days 8-11 same routine

What these day do not included is the time spent receiving blood transfusions. Each pint of blood takes about 2 hours. Remembering that the Chemo is killing the good and the possible bad blood, which is its job. I did need several transfusions.

Day 15 - Labs & 3 rounds of Chemo - this was a really bad day! I wasn't given my pre-medications for nausea, as I should have been. The pill was still in the nurses pocket when shortly after getting my infusion, I got violently sick, my first time and hopefully my last. I was finally discharged after a 10 hour day! Let's just say that "the email's hit the fan" the next day. Mom was on the phone getting names and sending emails to anyone she could get a number or address for. Don't mess with MY MOM!

Day 18 - Labs and blood transfusion

I have needed and am going to be needing a lot of blood and platelet transfusions which are provided by donation. So if you are in the area and have the time, remember that you can come to COH donation center by appointment and give what is called a "direct donation" in my name. This will not only help me but also help replenish the supply. I do want to say "thank you" to those of you that are coming in and donating and because of 'Privacy Policy's" they cannot disclose your names, so please just post a comment or let me know somehow. I have silicone bracelets and I would love to send you one and most of all be able to say THANKS!

So to stay with tradition, here are my numbers for yesterday:

WBC: 1.4

RBC: 2.8

ANC: 0.5

Hemoglobin: 8.4

Platelet: 54

This next week will be the same schedule as last week, treatment on Monday & Thursday. Then back to the schedule of the first two weeks. So it might be easier to say, that I have two weeks with one schedule and then 2 weeks of another, which rotate back and forth. This will be for the next 8 weeks. 

I guess it's a good that I am doing well and therefore don't have much to report and bad because I don't have much to report here on the blog. SOOOOOOOOO call, text, comment, skype, facebook or maybe even visit if you are HEALTHY.  Most of all keep praying. It's great to have a village of supporters.

Until next time or I hear from you first...

We haven't forgotten you...the bracelets will be in the mail soon. Thanks for your patience ü

it's been awhile...

well, let's see, it's day 9 of 56...

we left off with my new medication port, I came home on Thursday night after my chemo treatment. I was battling nausea, a headache and I just wanted to crawl into bed and wait for all of it to pass. Well, that is pretty much what I did, until Sunday.

On Sunday, my second family (YSSC) was having a reunion and I woke up feeling as though I could at least make an appearance. This took everything I had and by the time I left the reunion (after 4+ hours) I felt great. It was a good kind of tired and so great to see everyone. I have to admit that night kind of turned a corner. My appetite started coming back and I started feeling stronger and with little to know head or stomach pain. It was God medicine, a medicine that can only be given by friends that truly love and and care about you.

This weeks treatment is going to be pretty much the same as last, minus major surgery, of course. The process is not quite as streamlined as being in a hospital room. I have to go to them, wait in the waiting rooms, and wait some more. The clinic I am treated in is so busy and for every sick person is one well person and sometimes a family. Can you say, busy? 

Monday, I needed a blood transfusion in order to receive my Chemo. My numbers have done pretty well considering I am getting hit 7 out of the 7 days in a week with several kinds of chemo instead of the once per week while in the hospital. 

Here are my numbers from Monday:

WBC: 1.3

RBC: 2.64

Hemoglobin: 8.1

Platelets: 226 whew heewwww!

So this blog is dedicated to all of you who are praying and supporting me and my family, you're doing a fantastic job and I want to say thanks and keep up the God work. 

consolidation off to a rough start...

since the last update...

on Tuesday I started on a very unexpected path. Since the study that I am on requires me to have the chemo given into the spinal fluid and radiology was very unsuccessful at getting it in through the lumbar puncture, we had to move to plan B? Plan B is to have a Ommaya Reservoir put in, this will allow the medication to be injected into this reservoir/port and then it will travel down into my spine. This is a surgical procedure and I had 6 different appointments from 11a to 5p in order to be on the fast track to getting this port which is scheduled for tomorrow morning. Then at 5p I had my 2nd round of chemo of the 4 for the week. Long, Long day!

Today, I arrived at 8:45 and was taken into surgery by 9:30 and all went well. I am spending the night for observation and will be on my way home by tomorrow around 5ish just after my last round of chemo for the week and will rest for Friday-Sunday. Then be back here on Monday to do the same chemo schedule next week. The God news is that I will not have to go to radiology or have a puncture or have to lay flat on my back for 2 hours. AMEN!

On Monday, that spinal medication will be given to me in the new port and then the other 2 medications will be given in through my pikk line and I wont have to spend the whole day here. Then as I told you before Tuesday-Thursday are short stays to get the same 2 medications in my pikk line. 

I am sure that I have totally confused most of you. The main update is that I now have improved my treatment path by getting this port and this port can stay in place for as long as it is needed. So, we may have gotten off to a rough start but it will definitely be worth it.

Still searching for a calendar solution to help you keep up with me on this journey.

thanks for checking in...

let the Consolidation begin...(revised)

hello again. to all of you...

We have had a few days to catch our breath and I have been under doctors orders to REST. I had some visitors to the house, Kent came by to cut my hair and beard, I rode with mom on a last minute trip to Micheal's to get more yarn and we took a trip to my Aunt and Uncle's to see their newly remodeled house. 

Aunt Lynette, ME, Mom & Uncle Phil

Kelsey, ME, Carrie & Tayren

 

 

 

 

 

day 1 of Consolidation...

This begins the 56 days of Consolidation. The schedule is CRAZY and basically you go to one place in the building and then when you are done, they then tell you where your next appt is and how to get there. 

Monday's will be the longest day.
It involves: drawing blood to see what my numbers are. Today they were GREAT! so I didn't have to have any blood products to build my counts. So next, I went to see the doctor, then we went and got a bite to eat, while waiting on the car to go get some lunch, Mom and I spotted the one and only plane making a jet stream. (those of you who know the jet stream story, know what that means!) then back to radiology for chemo to be given through lumbar puncture, then while I am laying flat for 2 hours I will get 2 other chemo drugs.

BUT not today... I went in for the procedure and they weren't able to get any fluid. They went into a higher spot on my back and then they checked with the xray and the xray showed that everything was in the right place but after about 4 attempts to draw spinal fluid and the pain that came from the needle hitting the nerve, it came up dry. So the tech said he would try again in a higher spot to which I said, AHHHHH NOPE, I want to talk to the doctor. 

So, after I talked to the doctor and he talked to the doctor, it was agreed that we would have to put off this medication for the day and move on to the other 2 medications that are to be given in another building. I now have all the comforts of my induction phase, room, bed, bathroom and my best distraction TV and some "happy" drugs Mom keeps reminding me, "nothing just happens" & my dad's famous saying, "it is what it is". These are the Fletcher Family motto's to live by. I will be here for a few hours and then hopefully on my way home around 8:30p.

Tonight I will begin a pill form of chemo that I will be on, for most of this study, up to a 3 year program. So to say the least, Mondays, for the next 4 weeks will be the tough days (hopefully, not as tough as today). The good part is about all of this is that I will get to go home each day and sleep in my own bed, peace, quiet and home cooked food. 

Tuesday - Thursday for the next 2 weeks...
I have to go each day for chemo and have blood drawn to keep track of how I am doing.

Friday - Sunday...REST!!!!

We are trying to find a calendar gadget to add to this blog, so that all of you can see how crazy the schedule is and then know what day I am on, what I am having done and where I to find me. 

Here are my numbers for today:
WBC: 2.7
RBC: 3.41
Hemoblogin: 10.4
Platelets: 183 !!!!! (above 100, so I'm off to radiology)

We have bracelets that are Orange, which is the designated color for the fight against Leukemia. If you would like one please email us your address and we would be glad to send you one. You have two choices in bracelets: CANCER SUCKS or SAY IT, FIGHT IT, CURE IT. We also have youth sizes in the SAY IT, FIGHT IT, CURE IT. We also have rings that say HOPE, they run really small, mom is wearing hers on her pinkie. Let us know, it is our way of saying Thank You for being on this journey and your way of saying I am a "friend fighting for Tyler"

we will update you soon, feel free to stay in touch..

God News! I'm outta there...

Wednesday morning...

mom arrived just about 5 minutes short of seeing the doctors. We were told that they would be back after doing their rounds on that floor. Well, we ordered breakfast and just as it was arriving, 2 ladies  knock and come in the room identifying themselves as being the Clinical Study Case Workers, we had never met them before and they said "they were here to give us our discharge instructions?" huh? I tell them that I haven't been told that I was going home. So, mom quickly took over and I did the one thing I was really good at after 30+ days, EAT. As they were talking to my mom to tell her about all the required paperwork and record keeping that was needed, I am already on info overload., so I focus on the the TV.  Next my doctor comes in to tell me, yes indeed we are going home and then begins talking with me as the other ladies are talking to mom. After her, in comes the nurse to unhook my IV and get it wrapped to go home, the PCA (patient care assistant) in to take my vitals, Blood Pressure 191/35!!!!, the Case manager pops her head in the door to get my mom's attention to let her know that the pharmacy has all the prescriptions ready and then the guy from food services comes in to bring mom her cup of coffee that they had forgotten on her breakfast tray that was just sitting there getting cold. Can you say CHAOS? Within minutes, everyone was gone and mom and I kind of just sat there staring into space wondering, what had just happened?

So mom decides that it would be a good time to eat her cold breakfast because she was now in training for the next leg of this race.

Now I will slow down and give you some more details.

The bone marrow sample came back with less than 1% mrd (minimal residue disease) which indicates that I am in remission and that I will be moving onto the next phase of treatment which is called "Consolidation". So your asking what is that? The best I can tell you is that it is going to be for the next 56 days and the schedule is crazy. The best part is that I will not have to be readmitted unless I develop an infection or complications. All of this treatment phase will be done at COH in the clinic and on almost a daily basis for the next 2 months. I am going to start this phase on Monday, Feb. 7. So for now all that I need to know, according to COH, is to show up at 10am on Monday, by then the appointment department will have a calendar of scheduled appointments for me. Great!

So by now I have developed a headache, which concerns my mom so she just wants me to lay down and relax, call the nurse and let her know. As she begins to pack up my 30 days worth of hospital stay and stuff. It basically amounted to two trips to the car with a wheelchair full of stuff. Then we decide to wait 30 minutes to see if my headache would improve with the Tylenol that I was given (plus my PCA needed to go to lunch). lol

I'm outta here!

To stay consistent, here are my departing lab numbers:
WBC: 1.8
ANC: .7
RBC: 2.97
Hemoglobin: 9.4
Platelets: 80
Gluecose: under control

The Recreation Manager stopped by to let us know that today, in celebration of my discharge from the hospital, she will be handing out the beanies and teaching how to make them as the activity of the day. She wanted us to know how much she appreciated what we had done and that she has already started to teach her counterparts how to use the looms and make hats. We told her that we would stop by and see her with more beanies as we continue to make them and collect them from the "friends fighting for Tyler" elves.

So by 1:15pm on Wednesday, I was in on my way HOME, first stop IN & OUT! and then for dinner PIZZA HUT, a special thanks to Katie and Dale, you guys are the best and the pizza and wings were GREAT!

Wednesday - Monday...

So I will spend these 5 days at home, it so nice and quiet here. No various hospital staff knocking and entering the room to pick up trash, sharps, linens, to clean the bathroom, mop the floor, use a scanner to scan the bar codes of all the equipment in my room, PCA's to do bathroom checks and take vitals every 4 hours 24/7, food service calling to remind me to order my food and numerous calls for my nurse to come because of BEEPING IV monitors. I'm just kicking back in the comfort and quiet of home, is it nice to be home again. Ü

I want to say thank you for being on this journey with me and my family, please continue to pray and send your notes, texts and phone calls. We will update you again, after my I have all of the details of this next phase.

my love to all of you...

results pending...

I know, I know everyone is wondering... what's the news?

Well, here is just a little update to catch you up. Monday, MY doctor drew my bone marrow at 11am and she didn't have trouble getting the vile full but even she wasn't sure that there was enough marrow. She couldn't see as many little particles, that are bone fragments, that she is use to seeing, mostly blood but I can tell you that she was pushing so hard on that needle that she was pushing me down into the bed. I really don't think she could have pushed any harder. Mom said that she was using all of her body to push and that her hand was even shaking because she was pushing so hard. The Fletcher's have strong minds, bodies, souls and bones. lol

The sample was sent out to Seattle, WA for testing and as of today we still don't know if there is enough to test or what the results are, if there is. We are hoping for Wednesday. So while all of this waiting is going on, there is talk of me getting to go home. That in itself is encouraging. All of that paperwork is in place. So it can be this week or in about two weeks from the day we get the results. (of course you have to factor in Hospital Time)

My numbers are...

WBC: 1.4

ANC: .5 (new, see margin for normal)

      these are the 2 most watched numbers that have to climb
RBC: 2.90
Hemoglobin: 9.2
Platelet: 62
Glucose: 152

Here are pix of my room, I want to say thanks to Kent and Laurie, for helping my mom get this room ready for me to come home. Ü

BEFORE!!!! Ü

New Bed & Headboard

Custom Closet

Drop down desk

Closet before (gold trim)

Closet after (matching custom trim)

New raised shower head

Old goofy shower head

So there you have it...you're all caught up. I look forward to reporting God news to you the next time you visit. Thanks for checking in...

half of the news is in & its God news...

day 30...

well, needless to say the day started a bit out of my control. My doctor came in and she did the regular exam and then stated that she is hoping for the results to be here before the end of the day. Great! Then in comes the nurse and says "transport" (that's those guys that push you in a wheelchair or on a gurney from one place to the other through secret hiding places and in elevators that they take you in one on one side and then push you out the other) is on their way to take you for a liver test. HUH? ooooookkkkkkk but my breakfast just got here. I leave the food and off to have an ultrasound. When I get back, I eat my breakfast that my nurse spared my frosted flakes and milk. Yeah, thanks Theresa!

Well, around 12:15 I decide to order my lunch and my mom calls in what I thought I wanted ,only to find out that now my diet has been changed. HUH? ooooookkkkkk. No concentrated sugars? whatever that means and that meant that half of what I wanted I couldn't have because of low carb, low bacteria, at least this is what the kitchen is saying. This as you can imagine sends moma bear into a "what do you mean he has to watch his sugar and is being restricted as to the amount of carbs he can have and limited calories?" She pushes the button to call the nurse and then calls the dietitian while she's waiting for the nurse to come in, she is going to get the bottom of this! Long story short Mom Wins! more than a few wires got crossed and the problem was resolved. My body has been doing pretty well at maintaining my sugar and I have only been off of the steroids, which has been causing my sugar problems, for less than 24 hours.

I had a visit from some good friends from young life and was able to spend some time away from "my better half" (unhook for the iv pole) and that was a really nice break.

So, soon after that my doctor called with God news and bad news she said, ooooookkkk. The God news is that the bone sample was clean and without any leukemia cells found. The bad news was that the bone marrow sample was unable to be used for testing and another one will need to be done on Monday. This is the test that needs to be less than 1% residual cells. oooookkkkk. So here is the long and the short of it. This weekend I will pretty much be chilling here and allowing my blood to continue to build. On Monday, I will have just a bone marrow draw ant then it will take 2 days for the results to know whether or not I am on my way home and onto the next phase "consolidation" or if I need to stay for the "extended induction" for 2 more weeks. 

We also had some more God news and that was that the doctor did a search for possible bone marrow transplant matches for me in the National Database and the over 1800 potential matches cam eback! That's great. Now she will run what is called a High Resolution test and see how many of the 1800 are even a better match. This is on the "if" I am to need a transplant. God is good because I only need 1 match!

So, I want to thank you for all of your prayers and God for hearing them up to this point. I can wait a few more days in order to make sure that this ugly disease is in remission. 

Here are my numbers for today:

WBC: .80

RBC: 2.88

Hemoglobin: 9.2

Glucose: 171

Fibrinogen: 245

until next time, stay in touch & God bless you and our God news!

day before, THE DAY...

day 28...
Good news to report,

1. My blood is working on its own and slowly building, with just a little help of platelets or whole blood
2. I have enjoyed short visits by some good friends
3. We have made enough beanies, and giving A Gift of Hope,  for the Children's Floor. Our thanks to the "friends fighting for Tyler".
4. I will get an opportunity to go to the Children's floor tomorrow or Friday to teach them them how to make beanies, our family's organization has donated the loom's and yarn to the hospital for recreation and also for the family members to use during their stay here.
5. I was visited by Season 2, American Idol contestant, Josh Gracin today. Thanks to Sean's mom for thinking of me and having him visit Ü.

 

Josh Gracin Facebook link

Here are my numbers:
WBC: .60
RBC: 2.80
Hemoglobin: 8.9
Platelet: 34
Gluecose: 307
Fibrinogin: 205

day 29 will start with an 7:30a bone marrow test and then at 11a or 3p a lumbar puncture depending on how successful they are at getting my platelets up over 75. Ouch Charlie, that's going to hurt me!

Click here for a video that is a family favorite! 

Ouch, Charlie! 

This, of course is THE DAY and we will find out how successful this first 28 days has been. The result should be in by Friday evening (but remember we are on hospital time). We want to have less than 1% of the bad cells. Then if my blood continues to improve, I will be headed home and them moved on to the consolidation part of the study I am in.

it's great to have you on the journey with me, thanks!

A REQUEST FROM MOM: Please send any photos of Tyler you may have, I would like to make a collage of these photos and add to them as we travel this journey. If you visit with him, tell him to remember his phone and tell him "your mom wants a picture of us together". Please send these photos to the email address on the right side of this blog. If you have any questions please feel free to email me. Thank you in advance for taking the time to search for these and send them. Ü

overdue update...

day 25...I am doing good, I have been feeling good and I really don't have much new to report. I am spending my time watching movies, Law & Order and CSI. Today, my brother Grant came by for a visit and my Aunt and Uncle are coming this afternoon. 

On friday night, my mom and her friend went on a FIND FOOD NOW excursion. The food service here stops as 6:45p and then the only thing that is available is PB&J or Tuna, yuck! So they went out to the grocery store to find something that I am allowed to eat and that would satisfy my hunger that is caused from all of the steroids I have to take. They were successful by bringing back frozen chicken patty & biscuits that could be microwaved by the nurses and then brought into my room on their plate. This is of course to eliminate any possibility of bacteria. I am eating as much protein as possible because I am having to watch my blood sugar/glucose as you know because of the steroids, which means more protein and less carbs. There is so much to keep track of and none of it really is in my control.  So the bottom line is that I eat off of the menu that they give me, as much as I want and as often as I can from 6:45a to 6:45p and now I have a backup stash in the nurses station for after hours.

My mom and brother Kent are really busy getting my room ready at my mom's house. We picked out furniture from IKEA, mom calls it I Kill Ya because she feels like a mouse in a maze looking for cheese. Kent has been the delivery and put together person. I have seen pictures of the process and will post them once it is completely set up for me. She thinks of everything and then even rethinks that. Ü

Here are my latest numbers:
WBC:. .20
RBC: 2.76
Hemoglobin: 8.4
Platelets: 28, 34
Glucose: 305
Blasts: 0
Fibrinogen: 184
All of these numbers are with the support of many different blood products each day. I still remain side affect free and for that I am grateful.

Thanks for checking in and just a reminder: if you post a comment make sure you let me know who you are, I've had several comments signed, Anonymous?

the results are in...

the results from the bone marrow stain tests came back and my bone marrow shows 15% leukemia cells which is way down from the over 95% that I started with. The doctors where hoping to have 0% by now but because I have a marker that is a bit resistant to the chemo, we will definitely settle for the 15%. 

Tomorrow, day 22, I will have my last treatment for the induction period and then they will retest both the bone marrow and the spinal fluid on day 29 to see how it looks. I have to have less than 1 percent of leukemia cells at that time in order to go home or I will stay for the "extended induction" which is another 14 days. Which is a little bit different as far as the drugs that are used but it all is with the goal of getting below that 1%. 

I did get good news today though, I DON'T have to have more spinal fluid drawn tomorrow morning!!!! There was a mix up in the doctors instructions and I escaped the needle and laying flat for another week and they promise me that the chemo will be tomorrow night after 10pm. AMEN! that will mean that mom is one on watch while I sleep. 

I did get a little pampering yesterday, my beard was really bugging me so the hospital has a barber/stylist service that came to my room and I had my beard and hair trimmed. That was nice. The doctors are still telling me that this could be the week that I lose my hair, at least I'll look good until then. I don't know if I have said before, I am not able to use anything that could introduce bacteria or possibly cause a cut. So I have to brush my teeth with a foam sponge thingy with toothpaste and I can't use a razor. I have to use everything only once which includes toenail clippers and finger nail files also. Everything I eat is a one portion package and has to be hot if it's food and if it is a drink, I have to drink it within 1 hour. This is truly been a life changing event for every aspect of my life. But as my dad would say, "it is what it is".

thanks, City of Hope

Labs are staying the same. No blasts in the blood, only the 15% in the bone marrow. God News!

Spent the another day with my brother while mom did some stuff...thanks bro!

(1) Blue Monster (1) Beanie and a nap

Note: this picture was captured by the hospital security and is being posted without the written permission of the subject pictured,

I'm doing great thanks to all of your prayers and support. Thanks!

monday update...

I've been hanging out over the weekend. My results of the last bone marrow had to be sent out to the study lab  last Thursday and were suppose to be back this evening. But as hospital time goes the lab did not get a chance to read the slides today, so we hope to have the results Tuesday. These results are pretty important to whether or not what they are doing is working as they think and I'll get out of here in the 28-30 days or if I will need to stay an additional 14 days before going home. I know that I am on God's time and it's perfect!

I have had the chance to see a couple of friends, mostly because I begged the doctor to let me go into the lobby and she had to okay it for the nurses to let me lose. I did find that I really didn't have as much energy as I thought but it was good to see some friendly faces and different scenery even though it for just a short time.

Both of my brothers have given blood samples to see if they are a potential match for a bone marrow transplant should I need one. We found out that Kent is a half match and are still waiting for the results of Grant. As it stands now, the doctor is not expecting to do a transplant although we are only half way through this induction and things can change depending on how I respond to all of this chemotherapy.

I want to say thank you to all of you that have donated blood, do me a favor and let me know when you do because I just might be up to a brief visit. Make sure that you tell them your donating for me and if it can, it will be processed and ready for me as I need it and if we aren't a complete match it will still be a great gift to someone else and replace the blood I have used.

I am asking for God's peace, strength and understanding throughout this journey for myself, my mom and my family. I will update you with as soon as the results are in. I will also be getting another Lumbar Puncture and chemo in that spot and my regularly scheduled 4th round of chemo on Thursday Day 22.

I pray for God to bless each one of you in a special way for joining me on this journey...

kickin back on day 19

WBC: .3
RBC:  2.82
Hemoglobin: 8.8
Platelets: 28
Glucose: 181
Blasts: 000
Fibrinogen: 113

day 17...

to give a short update...I have done pretty well since round 3 of my treatment. The biggest side affect is fatigue and tiredness. I am still being treated to build my blood. I have been having different infusions that in an attempt to help me build and keep my counts up.

Here are my numbers for Day 16:

WBC: .30

RBC: 2.70

Hemoglobin: 8.4

Platelets: 33

Glucose: 244

Fibrinogen: 173

Blasts: 0%

Today, Day 17:

WBC: .30

RBC: 2.73

Hemoglobin: 8.6

Platelets: 24

Glucose: 244

Fibrinogen:129

Blasts: 0%

I spent the day resting, I am able to get back to sleep after the morning rounds and so my days are starting a bit later. I want you to all know that I am still not able to have visitors because of my WBC. Once that number begins to climb and stay above 1.0 then I will be able to see those of you who are healthy. I just don't have the ability to fight against the smallest germs and at this stage I do not want to even get a cold because of the strain it could put on my body and it is already being pushed its breaking point now in order to kill and put this cancer into remission.

Also, because of the chemotherapy I am not able to focus for very long on reading or typing. So, I am still going on FB and Skype, I just can't stay focused for a very long conversation.  It makes me sad to tell you this information and I all of you will understand that you all mean so much to me and I am thankful to all of you for joining me on this journey and I want to be  able to be completely honest with you. That means the good, the bad & the ugly,

Thanks for your understanding, just knowing your out there, makes being in here, better. I am on day 17 of 28 and depending on if my Leukemia is in full remission on day 28 will determine if I have to stay for what is called "Extended Induction" which is another 14 days or I get to go home. So keep praying and we will let God answer.

day 15...

well today started bright and early with a bone marrow biopsy, then back to sleep until 12pm. Then a bit of a unexpected change...I received my 3rd chemo infusion during the day. I really liked the after 10pm infusions because I was off to sleep and my mom kept watch. Well, today she still kept watch but I wasn't off to sleep until my nap at 5:30pm. Up for a bite of dinner and then will be back to sleep under the watchful eye's of my mom.

We have added a link to the COH Blood Donation Center. We hope this will help you with any questions you may have. Please still leave a comment or email us if you plan to donate here at COH because the blood bank will coordinate the donations so that the blood can be drawn and given to Tyler based on how often he will need either platelets or blood. Make sure you include your contact information with your comment or email. We also have a kit available if you are interested in being placed on the National Registry for Bone Marrow Transplant. Again, we want to say that this is such a special gift that all of you are giving. It will make a difference for me and for many others.

Today's Numbers:
WBC: .3
RBC: 2.53
Hemoglobin: 8.0
Platelets: 26, 31 & up over 40
Glucose: 153
Blasts: 0%
More Platelets last night
Cryopercipitate today and that number is climbing slowly: now 164 (normal 170-440)

day 13...

today, I am beginning to feel the reality of my treatment. I am very tired and really don't have any energy, such a difference from the days before arrive here and to think that I was soooooo sick then. The good thing about feeling this way is that I am not having to deal with any other side affects? effects? (not sure which tense to use?) from all of this.

Get this, there are two things in our normal blood that my blood is low on and to keep it simple: one is to keep me from bleeding and the other is to keep me from forming blood clots. These two things are normally in our blood even though it seems like they would work against each other. So starting yesterday I began transfusions of Cryoprecipitate, that is the one for the bleeding. Then the nurse comes in with another bag for "my better half" which she tells us is to prevent clotting and it will only take 20 minutes to get into my body. She then says that the Pharmacist told her not to drop the bag because it costs $70,000.00!!!! What? how can anything cost that much? This is something that comes from blood donors, it's manufacturer is GOD and they can sleep at night? Then I found out from my Dad and Mom's first condo, in 1980 cost $74,000. All of this is hard enough to grasp and then when the costs are added in, I realize that God IS In Control, He is my provider and my job is fight this fight and let him handle the rest.

So, while we are on the subject of blood, many of you have been asking me about coming in a donating blood or platelets. The answer to this is YES and please do. Here is how it works; for every pint of blood is donated in my name, it replenishes the blood supply and then it works as a credit or exchange for the blood that I need. So BEFORE you come down to donate, please post a comment and let me know your name and contact info and my mom will give you the necessary information you need. Note: all of the donation comments will be kept private and will not be published. Thank you in advance for helping me and many others by donating.

Here are my counts for today:

WBC: .30

RBC: 2.69

Hemoglobin: 8.6

Platelets: 31

Gluecose: 241

Blasts: 000000%

I want to also say to all of you that are asking about visiting, unfortunately until my WBC is above 1.00 and steady, I cannot have visitors. My body does not have the ability to fight and I am at a very high risk for infections and even the everyday cold. Plus right now, I wouldn't be very good company because I just don't feel up to doing much of anything. So for now watch for me on Facebook or Skype and we can chat there and I look forward to seeing you soon, in person.

The doctors tell me that everything is On Track and going just as it should be. My next bone marrow test and chemo treatment will be Thursday, day 15, the half way mark!

thanks for fighting the fight with me...

day 12...

well, I slept pretty well and my stomach felt a bit better. This morning, my brother Kent filled in for my mom so that she could attend her bible study. Kent tried to direct traffic from outside my room when he got here in order to let the patient get his much needed sleep, unfortunately he lost the battle when and as Tyler seemed to think, about 15 people came asking questions, talking and then leaving. I want to post a notice on my door, "This Patient Does NOT like morning, please allow him to have his breakfast before entering." I really don't think that would help. 

The day brought new medicines to my day which is called Cryopercipitate that this is to help with the clotting factors in my blood and then Antithrombin which is a drug to prevent blood clots. I know you, are probably scratching you head right now. To help a little, our blood contains separate factors for clotting and to prevent blood clots and both of mine are lower than normal. That's is why they are doctors and I am the patient. 

Beanie making has caught on with the nurses and now we are letting them pick a color and making one for them. 

Nurse Theresa (alias: Christina)

I don't know if I posted the picture of one of my nurses but for you Greys Anatomy fans, she could be Christina's twin. She looks, talks and acts just like her as long as she has a mask on she could pass as her twin/sister. I even noticed that she wears Gray's Anatomy scrubs. Anyway, she wanted one for each of her boys, she had tried to make them herself with a square loom and wasn't successful so mom volunteered to make two for her.

Nice and comfy, thanks mom!

Mom has something to keep herself busy, doing all that she is doing for me and then as always for others. 

Here are my numbers for today:

WBC: .30

RBC: 2.80

Hemoglobin: 8.8

Platelets: 28

Glucose: 241

Blasts: 000000000% 

Also, today I went and played Texas Hold-em with some other patients here on this floor and did what? Beat them. (with a little help from the Recreation Therapist giving me her chips) Ü

Thanks for checking in...

day 11

Pretty much a copy day 10...I do have God news though. On my last labs, I didn't have any of what they call blasts listed, well it's because there weren't any! That is a great step in the right direction. The doctor has said that the goal is 0 and so for now, we're THERE baby!

My stomach pain as gotten a bit better, they still can't pinpoint why I'm having it other than it's common to have generalized stomach pain.

Anyway not much more, just want to keep you all on the same page.

Here are my blood numbers:

WBC: .40

RBC:  2.82

Hemoglobin: 8.6

Platelets: 33 (when it drops below 30, I have to get a transfusion)

Glucose: 128

Blasts: 000000000!!!!!!

I have been making a beanie for a friend, that's been helping me the time pass. I'm going to have to keep my head warm soon.

Until next time...