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...

day 10...

today was pretty quiet. I have to admit this was my first lousy day. My stomach started hurting and it is a pain that I can't describe and it really hasn't gone away nor could the nurses find something to help in my various prescribed list of drugs. The nurses tell me to remember that every cell in my body is being killed essentially and it cause an overall irritation of all of my organs. They also told me that stomach pain is a very common complaint of patients going through chemo.

I am more tired and don't have as much energy as past days, today was the first day I took a nap. I am doing my very best to settle into this new journey and trying not to fight it. Each day will have issues good and bad and with God and my mom at my side I can make it through.

I want to let you all know that I am confined to this floor now and can't even go out into the lobby. This floor has a special filtration system to protect all of the patients from bacteria and germs. I would love to have visitors but I have to keep myself protected and also the other patients on this floor, so "it is what it is" for now. I do appreciate all of your prayers, encouragement, notes, texts and emails they are the fuel that keeps me fighting. All of you are an important part of this journey.

Blood Counts today:

WBC: .50

RBC:  2.20

Hemoglobin: 9.0

Platelets: 39

Glucose: 151

Blasts: unknown, not recorded in last nights test?

Thanks, for checking in Ü...make sure you give us your vote on the poll regarding the medical info...

end of round 2...

with my second round of chemo on board, I had a pretty good night. Mom tells me that I talked in my sleep a lot and she could not make sense of what I was say, so she would just tell me, "everything is ok" and I would say "oh" and go back to sleep. I was also up at least 5 times, getting rid of all the fluids they are pumping into me. They do this because the chemo kills just about every cell in my body the good and the bad and of course the white ones are the ones that we are after, so they push fluids in order to flush them out of my body. It is amazing how much has been learned about treating this and they seem to know just how far and hard they can push the body in order to force it to return to a normal pattern. Normal is to constantly be producing good blood cells that will push out the bad. 

I was able to stay asleep despite all of the vitals and blood test that are so necessary during the night, when I'm suppose to be SLEEPING! The doctor came in and woke me up, to ask his doctor questions (I'm not sure how he made it past my moms "look" that said "he's sleeping!") and he said "you have a day off" to which I said back "so that means I can get out of here today?" to which he promptly chuckled and said "no, just around the 6th floor" and left. I was thinking, "my brother, Kent is coming to stay today, while mom regroups and if anyone could figure out how to get me out of here, it was him". Anyway, I was able to go back to sleep until about 9.

Here are my day 8 numbers:
WBC: .30
RBC:  2.60
Platelet: 64
Hemoglobin: 8.6
Glucose: 286
Blasts: 22%

and for you medical followers, another number that seems to be an indicator is what is called "blasts". The easiest way to explain these is to say that are the bad cells multiplying/blasting or growing. In normal blood there are 0% blasts. Over the last few days my have been going up. The goal is to kill theses cells with the chemo. They also measure these in the bone marrow which is why I have to have that procedure over an over. In bone marrow they want the number less than 5%.

My test results came back today, bone marrow has dropped to below 95% leukemia cells and the bone sample showed some blank spots which is all GOD NEWS - GOOD NEWS!

Kent arrived with his computer and a ton of cd's and we both spent the day installing music on our computers and phones. It was great to have this as a distraction and even better to spend the day with him. Thanks, Kent. I love you!

day 6, 7 & 8 of 28

First let me say, thanks for your patience. It's been a bit crazy and we are still adjusting to hospital life.

We wanted to catch you up on all the happenings over the last few days and we (mom) are going to try to post at the end of the day. It is a bit hard because some days are so full, that by the end of the day mom wants to pack up her stuff, get my dirty clothes, make a "to bring tomorrow" list and head home so she can be back here bright and early then next morning and after she leaves, I just crash.

I am in a Study Program and it has a schedule of treatment. It is called the 'Induction Phase" and it will be a 28 day schedule. I don't have chemo everyday just certain days and certain medications. So, day 1, 8, 15 and 22 of my treatment are considered my main chemo days and then on the days in between, they are testing my blood to see how the chemo is working.

These are the blood levels we are watching: NOTE: this is the medical stuff, some of you may be interested, if not, feel free to scroll down to Day 6.

• Hemoglobin: which is how much blood I have. We told you when we began I started at 4, normal being 13-18
• White blood count: which when I came in was 25.0 which was really high but it was what was keeping me going. It is also my body's ability to fight infection so now I am running around 0.5 to 0.8 which is really low. Normal is between 4.0-11.0.
• Platelet: this has to do with clotting mainly and this has to be really high on days that I have and bone marrow tests or spinal fluid test. They actually punch a hole in my bone and my platelets need to be high to insure that the hold seals off completely. Mine has been running really low in the 20's and normal is 150 to 350. For the test purposes they have to get it up to 75 which is kind of like a race because my body is eating them as fast as they are pumping them in. So, almost daily I am getting a transfusion of whole blood or platelets and that just keeps me in the 20's.
• Blood Sugar (glucose): this is really affected by the twice a day steroids that I am receiving. Steroids do a great job at keeping all of the really bad side effects of chemotherapy away and keep me feeling pretty good but they also cause my blood sugar to go really high. They manage this with insulin.  

Ok, you all have passed Tyler's Leukemia Treatment "Induction 101". I hope this helps those of you who like this kind of stuff. Feel free to email my Assistant, my mom, if you have any questions regarding this. 

day 6...

Today was a one time, treatment. This chemo was injected into both of my thighs, they applied a numbing gel and then injected both thighs with 2 injections, OUCH, Charley! It really wasn't that bad and I didn't have any reaction to them so for that I am glad, the hardest part was having to wait all day and then having it put off to the next day because they couldn't get the medication here in time. Once, that was over I was able to take a breath and kick back and rest.

day 7...

A DAY OF REST... I slept great, mainly because I knew I had nothing to do today except rest. This is what I will be doing on the days that aren't Chemo days from now on. Letting my body rest.

day 8...

the day started with a bone marrow test at 9am that was suppose to be 10am. So I missed out on having my frosted flakes and having my mom here because the test was move up (hospital time)! The test went fine, not to uncomfortable, the fluid is drawn from my hip and today they also took a bone sample. This sample will help them see how effective the current treatments are working. 

So because of the test I could not take a shower, they don't want the needle site to get wet and because they tell me I am going to lose my hair, I decided to wash it while I have it. This is how you do it without a shower.

now I know why they call it a "shower cap"

Then, the race to get my platelets up over 75 for the spinal fluid draw, which of course is done from my lower spine. They were able to get my platelets up to 76 by 2:30p, so off to radiology I went for the test. This too is really not to bad. The hard part is that the pump me full of IV fluids, perform the test and then require me to lay flat for 2 hours after the test. I pretty much slept through the 2 hours with the help of all of the preventative drugs they give me prior to both of these test. If you could listen into my room, you would hear me snoring.

my better half

Spending the night with "My Better Half" for my second round of chemo. They try to give each chemo treatment at the same time which was 10:24pm according to my mom. She was there as I slept for the first treatment and she will spending the night with me tonite. Nothing gets by her. Nothing...

quite the day...not a quiet day...

day 5
I am finding out that weekend life vs. weekday life in the hospital is much different. Today I was suppose to have another round of chemo. It is going to be by injection and in the muscle. Well, as hospital time goes sometimes, 10a turned into 2p, that turned into, it's on its way, that turned into it wouldn't be ready until 6p. So we had good news and bad news. Good, not needles today and bad, going to have to wait until Tuesday because they prefer to give the medication during the day shift because any reaction that may occur and the day shift nurses are use to dealing with these issues. O K

At this point my attitude has been one day at a time and God's timing is perfect. So I ordered my dinner and took it easy for the rest of the night. I am able to download movies from itunes and the hospital has a pretty good channel selection. I like watching Law & Order and it's on USA channel during the day so that really keeps my mind off of all the stuff going on here.

My blood work is showing that the chemo is doing its job. Unfortunately, my white count has now dropped below 1000, so I need to have minimal exposure to germs and I need to stay in my room and very few visitors. Also, as expected my blood sugar level is really high because of the steroids, so now they are treating that with insulin when it gets high. I am also expected to lose my hair, I am letting it do its own thing until that happens and then will shave it all off.

It has been good to stay up with all of you via the internet. I want to say "thanks" to all of you for joining me on this journey.

sunday, a day of rest...

I am officially hooked back up to my outside world, my new computer has been a great addition to my room here at COH.  I spent most of the day getting it set up and remembering all of my passwords. So I can be seen online via Facebook, Skype (tfletcher88), text, email and this blog. If any of you have any other ideas let me know. lol

I am feeling pretty good, still eating good and really haven't had any side effects from the what I can tell. Having to lay in bed is good and bad. My mom did buy egg crate for the mattress and that has helped. I also was able to take 3 full laps around the floor yesterday, which is equal to almost 1/2 mile. 4 laps equal 1/2 and 8 equals 1 mile.

I am getting really acquainted with what I am calling "my better half", it's my IV pole with all of the meds and fluids hanging from it. We go everywhere together.

All of my blood work shows that the drugs are doing what they are suppose to. Tomorrow is going to be another chemo day. It will be my 4th type of drug. It is going to be given 4 injections, ouch, so stay tuned.


Thanks to all of you for reaching out in the various forms, I can't tell you how much that means to me.

1/3/11 4:45pm UPDATE:
My next chemotherapy treatment has been moved to Tuesday.

happy new year...

Well, so far 2011 has treated me well, I am still free of the nausea and other side effects. I feel good and spent New Years Eve with my mom and her friend. We celebrated a New York time zone New Year so that I could get some sleep. I'm getting use to hospital life, having to call a nurse every time I do anything & I mean everything. They are keeping track of it ALL.

My white blood count (which is my ability to fight infection) is dropping. My hemoglobin that was 4 when this all started is only 7.3 with 13-18 being normal, which means my body is still having trouble making blood and my blood sugar is going up because of the steroids, soon this will be managed by insulin. ALL of this is expected. They are trying to kill all of the bad blood cells and all of my numbers are the indicators that is what is happening. Even though it seems bad, it's all good signs.

I have to take a lot of steroids, this study I am in, has found that it is the best drug to keep my body fighting and keep me from feeling nauseous. I am still hungry and eating and the food is decent. I can pretty much order anything, any time and as much as I want.

I am going to be getting a laptop and will be able to skype, facebook and email much easier than on my phone. So watch for me online in one way or the other. Being able to stay in touch with all of you is great!

happy new year...

day one of treatment...

The day was very, very crazy. The team here at COH is amazing. These are a few just a few of the people I have on my team:
3 Doctors that rotate caring for me on a 2 week basis
Social Worker
Occupational Therapist
Recreational Therapist
Chaplin
Clinical Trial Team Manager
Case Manager
Pediatric Doctor
RN
PCA (Patient Care Assistant)
Charge Nurse
Dietitian
I met each one of them, listen to each one tell me "here's my card" call me if you need anything! The hardest part of having all of these visits is that the nurses were working really hard at getting my blood count up high enough to have a lumbar puncture with a small amount of chemo and a bone marrow draw. Both which involve a very large needle! Part of getting ready for these test is I get a very high dose of benedryl to keep me from having an allergic reaction so that makes me very sleepy and made it hard to stay focused on what each one of them was telling me and then signing something which was stating that I understand/agree, huh? Well, the topper was when I had to listen to the explanation of the study program. It was a 48 page document and of course the doctor had to explain each page which included the drug names, that I couldn't pronounce if I needed to, the side effects of these drugs, as if any one of them would be something I want to deal with or could keep from happening. I guess they don't know that I live by my dad's attitude "it is what it is" and just wanted to say "yes, where do I sign?" I know that it is all for the best possible treatment involved and for that I am grateful.

So after the big day and all of the commotion, I ordered my dinner and then crashed at about 8pm and slept through my first treatment of what is called "induction".  At 10:24pm, I had 2 different drugs introduced: the first took 5 minutes to go in through the IV and then the second drug followed and it was what they called a "push" which goes in by syringe directly into the IV port.

The best part? I slept through it and had absolutely no side effects or reactions and my mom is in the room watching over me and every breath I take.  Good night...

Little reminder: Because of the chemo, my system is very weak and I cannot have visitors for a few days, so please text or call before you head down. Also, it is a hospital policy that absolutely no plants, balloons or flowers be allowed in the hospital. This is because of the possible exposure to bacteria for all the patients being treated here. My mom is working on an alternate idea. I'll keep you posted.