2 months into maintenance...

Update after a 2 months of the pill form of chemo. 

I have begun the 2 year journey of this maintenance and I have to say, I'm getting back into life. I am currently on an every two week visit to COH. One week for IV form of chemo, 5 days of steroids and lab work to see my levels. The other week I get to go in and have labs drawn and I get to leave. Then the nurse calls me with the results. I'm calling it my "stick and run". 

After the first month of the recommended dose of chemo, my labs show that my liver was inflamed and that could cause damage. So my dosage was cut down by almost half. This the chemotherapy treatment for leukemia is really hard on the liver and I have had bouts of this throughout my first year. If the liver suffers too much damage, it could prevent me from being able to get the treatment needed if my cancer reoccurs. So for now, the doctor is going to be dialing in the dose so that I get the highest dose based on what my body can handle. Taking these pills every day are the key to keeping the leukemia in remission. The plan is for the dose to be gradually increased to see what is the best balance for me and my body. 

The latest news is.....

I have a new buddy................................................and mom has his sister

Luke

River

They are toy size schnauzers and are 11 weeks old. (yes, their collars are cancer bracelets we wear on our wrists) This was something mom and I lots of spent time talking about while I was in treatment last year and we agreed once made it to maintenance and would have the time to spend with them, we would get a dog for each of us. Now the count in the house is 2 girls and 2 boys. They are inseparable and really should be called pete and repeat. Ü

Well that's about all the news this blog. Thank you for staying on this journey with me...

Until next time.  wait, current numbers below...

ANC: 2.2

WBC: 3.9

RBC:4.19

Hemoglobin: 13.9

Platelets: 170

day 1 of the final treatment cycle...Maintenance

where to start???? I guess the best way to say it is that, Each day IS a gift. When I look back at the last year now, it seems like it flew by. I spent almost half of the year at City of Hope getting the treatment required in order to get to this day. I'm so thankful that the cancer has stayed in remission throughout the year. There were some really big bumps in the road along the way and the last three months of 2011 really brought some true tests of faith. 

I was taken off of the study program by my doctor in the month of December for the following reasons. I had been taken off of one of the chemotherapy drugs that was being studied earlier this year and then in order to continue on the study for the full 3 years, I would be required to have radiation therapy on my brain. Leukemia can lead to brain cancer and I have never had any cancer cells found in my spinal fluid. Just so you can understand, when I have chemo in my Omaya Port, spinal fluid has to be removed and then the exact amount that is removed is replaced with the chemo drug. (This way it keeps the common side effect of a headache from occurring because of too much pressure.) Then the fluid that was removed is sent to the lab for testing. My doctor felt as though the possible benefits of the radiation was not worth the risks. Radiation is a part of this study because they want to have the best chance of protecting the brain in the very young children diagnosed with leukemia but she doesn't feel as though for the long term it would be good for me because I am so close to the cut off age of A.L.L. childhood leukemia treatment which is 30 years old. It doesn't really change the path of my treatment. It just means that my case will no longer be followed by the study guru's for the benefit of other and research. 

Today, I started Maintenance Therapy. This will last for at least the next 2 years. The schedule is basically every 30 days I will go to COH for one IV chemo drug call Vincristine and go for labs every 2 weeks. I will be taking my chemo now in pill form, that drug is called 6mp or Mercaptopurine everyday, Methotrexate every 7 days and steroids the first 5 days of every 30 day cycle, along with the other 7 daily pills have been on to protect my immune system and liver. PILLS and a lot of them. This is going to be better but I have to admit, not easy. Keeping the chemo in my body is a must and it will be the thing that keeps me from relapsing and having to have a bone marrow transplant, which is what is done if when the chemo fails and the cancer comes back. YIKES! Like everyone, taking pills is not what I do very well and especially when I feel good. So this is going to be a new path and I will have to think about taking good care of myself because as long as I do my part, the rest is in God's hands. As my doctor said if I take this seriously and take my pills everyday and I do relapse, I will at least know that I did everything I could by making my health priority.

I am feeling good, my hair is growing back, I actually have my beard back and I might even celebrate by letting it grow for the whole year to make up for the year I haven't had any. Only true friends, hang out with chemo, bald headed guys. God has blessed me with TRUE friends. I am looking forward to starting my life again. Beginning to dream about what I want to do when I grow up, a much more relaxed and minimal schedule with the COH. Once my medications are dialed in, I can start working again and start building my life. Mom, of course will be right beside me and I will stay living here with her through this leg of the journey. 

As a side note, I want to say thanks for your continued encouragement, even though I haven't been keeping you up on this blog. There never seemed to be enough information or time to type it in. Please now pray for a daily reminder to take my pills, to take care of myself and to keep fighting this fight.

Strong in Faith...

keep in touch...

Here are my starting numbers for 2012...

WBC: 4.4

RBC: 4.14

ANC: 2.3

Hemoglobin: 13.0

Platelet: 266

day 10 of 56 - delayed intensification 2

just a short update...

God News...I am now on my last 56 day round of chemo and then I move to the 2 years of of pill form of chemo with once a month visits to COH. Hoot Hoot!

I pray your Thanksgiving holiday was great, my family spent the weekend at the river and the weather was beautiful. We did a little off roading to the desert bar, watched the beautiful sunsets, had a great turkey dinner and the best part was spending time together. 

I have been feeling good, just finished my first week of steroids and that is a bit challenging at times because I am constantly hungry, grrrrrrr! I am off for this week and then have to take them for one more week. This is the round that I did a couple months back, pretty tough. I have 32 days of treatment at COH and a bunch of added medications. One day at a time.

For those of you who haven't seem me, I have officially lost all of my hair for the first time. I am keeping it shaved close because it is still falling out. That last round of chemo really took a toll and I have to admit it is kind of nice because I don't have to shave everyday. It's very slow growing. Of course, all the nurses say, "don't worry, it will come back" easy for them to say, lol.

I'm still having a good time playing pool in tournaments and on the league that I'm on. I have also been able to help out my friend who own the pool hall, doing little runs to pick up things or going out to look at pool tables for sale, to replace the older ones in the hall. 

I would like to wish each of you the best of blessings for the holiday and not to forget the reason for the season. Jesus!

until next time...

home at last...

First let me thank each one of you for the prayers during the last 2 weeks while I was in the hospital. Thank You... Ü

Well, this stay really ended up being my worst. The sores from head to toe were just beginning when I was admitted. I couldn't eat anything or even swallow pills for over 15 of the 19 days that I was inpatient. I was on constant antibiotics, had several platelet and whole blood transfusions, a constant flow of fluids and then anything that my body was low on over the entire stay. My immune system is really low and that is what was keeping me from healing. Because the sores will not heal until my blood counts start getting higher and this stay they dropped very low and at one point my ANC was .0 ! I can't explain how that is possible except I can tell you it was a true measurement of how I felt. I could not come home until my blood started to build so a .5 ANC was my goal and today was the day. If you remember back the ANC is the number that indicates my ability to fight off even the smallest of infections and even though my other numbers as you will see are much higher, the ANC is the measurement of how my immune system is doing.

So now the plan is to go back to on Monday for labs to see if the numbers are still climbing and if I need anything to continue to boost my immune system and then from there I am not sure. Once my ANC is at .75 and my platelets are at least 70, per the protocol, I am ready for the next dose of chemo. This last dose was clearly too high and pushed my body to the extreme, so more discussion needs to be done among the study guru's and I will find out that plan on Monday. 

Anyway, I'm happy to be at home to rest and get back on the road of life. 

Here are my counts...

WBC: 3.5

RBC: 3.49

ANC: .5 hoot, hoot!

Hemoglobin: 11.4

Platelets: 295

day 30 of delayed maintenance...

greetings from COH???? yes, on Tuesday of this week I ended up with severe side effects from my treatment on Friday, October 7th which was an increased dose of Methotrexate chemo. Well, the Dr. admitted that this dose was too much for my body,

Saturday & Sunday good days, played some pool Saturday and went to the Swap Meet on Friday with a friend. Came home and was tired and decided to take it easy the rest of the day. Well, I woke up on Monday with a fever, throwing up, and throat pain for the whole day and after realizing that it wasn't getting better at home, we headed into the Clinic hoping to get what I needed for the nausea and possibly some blood and then be able to go HOME, instead I ended up being admitted and on my favorite 3 floor for antibiotic treatment and mouth care.

 Since I have been here I haven't been able to eat. I have had the same symptoms up until yesterday, when the throwing up finally lessened. I have lesions/sores from on end to the other and this is the worse case of them that I have had. My throat is so swollen that I can't talk and am unable to take any pills and I have scabs on my lips, gums and even my eyelid. All of my medications have to be IV. The antibiotics cause me to get what that call Clostridium difficile or C diff & mucositis (you can click on those if you are curious) c diff is basically and infection in my stomach which causes another whole set of issues on top of the ones that I already have. It seems like the circle, never ending. Treat one problem, create another treat that problem create another problem, and so on and so on. To add even more to the situations it looks like I will be here for at least another week! This is truly what they mean when you see a CANCER SUCKS bracelet or sign.

Today, the fever is gone as is the nausea and I am looking forward to my throat getting better so I can start eating again and then get the heck out of here.

Just want to say "Sorry, to my Tuesday and Wednesday night Pool Team. I let you down and I want you to know that I am sorry that I haven't been there." Send me a text or FB me with how we do this week. I look forward to playing soon.

This is one of those "not so good news" blogs, just wanted to keep you up to date on this journey.

Peace.

Here are my numbers:
WBC 1.6
RBC: 2.54
Hemoglobin: 8.8
Platelets: 53

day 18 of Delayed Maintenance...

Let me first say, that it is nice to have my ghost writer back (mom)! As some of you may know, she was trying to secure a 50K Grant and has poured her heart and extra hours into getting votes for it. She is now in the "wait and see" stage. The final answer will come on October 23rd. So thanks to all of you for waiting on this update.

Here is the readers digest version of the last weeks. I did ended up getting my final dose of chemo for the Delayed Intensification I and then it did take a long time for my counts to recover before starting Delayed Maintenance. Basically what happened is the Study Guru's had to have a meeting and make a decision as to my best care. The PEG that caused all of the problems in August also played with my platelet count and it took over 3 weeks for my platelets to get to the level required in order to start this phase. 

The decision was made to stop the use of this PEG chemotherapy drug which is a part of the study because my doctor and the Guru's want to keep my liver as healthy as possible for my future and the possibility of needing a Bone Marrow Transplant. My protocol called for 4 more doses of this PEG chemo and it is known for irritating the liver and causing the trouble that I had, which we now know was a pretty serious reaction. There is good and bad about losing the use of this study drug. The bad is that it is one less drug/bullet to fight the cancer which may or may not change to course of my treatment success and the good is, that as my brother Kent said, we dodged a bullet and the chance of this drug causing a even more serious and long term effect on my liver. So the way I see it is "it is what it is" and God IS STILL IN CONTROL!

My platelets just didn't seem to want to bounce back and took their own time to recover from a low of 19 on September 6th. Mom and the nurses were kidding with me and saying to turn the switch back on and to quit messing around Ü so I did. On the Sept. 8th they were 41and on Sept. 15th - 81. I was finally ready to start on this phase of treatment and this schedule is every about every 10 days, each dose increasing in strength but I do NOT have to go back for any appointments in between treatments. Woot ! Woot! 

So, I have been enjoying playing pool and am now playing on 2 different teams and have been playing in tournaments in local cities and over all am feeling pretty good. I have to admit not having to go to COH as often, has been like a breath of fresh air. 

Here are my counts as of September 27th...

WBC: 2.8

RBC: 2.99

ANC: 1.3

Hemoglobin: 10.8

Platelets: 164

Again, thanks to all of you who continue to pray for me and my family. Until next time and much sooner that 6 weeks, blessings...

the days got worse but are starting to get better...

I did get out of the hospital on my birthday and was so weak that I spent the night here at home. I was so grateful that I was finally home. My first night is sooooo quiet that I have trouble sleeping and getting out of the habit of opening my mouth, raising my arm for the blood pressure cuff and extending my index finger for the pulse oxygen clip, to a nurse saying, "Mr. Fletcher, we need to take your vitals". Mom has a much quieter and gentler way and manages to get in and out without really having to wake up. I am so glad to be home.

Thursday, August 11, back to COH for labs and my last cycle of chemo for this round and I needed a transfusion of a blood product that was low.

Monday, labs only scheduled. A friend of mine came with me this appointment and COH didn't disappoint me, they drew labs and he and I went to lunch, came back needed another transfusion and then left it was a 12-5p day.

On Tuesday morning they call to say that I needed yet another transfusion and to come back for that. Ok, done.

Thursday, August 18, back for my day one of Interim Maintenance. I am scheduled for labs and if they are high enough I am to get Chemo in my Ommaya port and 2 kinds of IV chemo. (note: my doctor is not there to do this, she is at another conference. grrrrrrr!) Well, my labs were drawn and we waited and waited and then after about 2 hours the nurse comes back in to tell us that they need to be drawn again because the other ones were not able to be read, ok. More blood drawn and more waiting. I am soo over this place and having huge anxiety over 1. a strange doctor doing my Ommaya port injection and 2. having the bad reaction like the last time it was accessed and not wanting to have that headache again and 3. I have been at this place for 15 of the last 20 days. I felt like I was in prison, that I didn't have any say in what was going on and that this place runs my life. I was offered some meds to help with the anxiety and I told them that I didn't need them. What I needed was to just be able to go home, I didn't want to be there another minute. I was trying everything to get my mom to take me home and she kept saying, there is no other option, we need to keep fighting and believe they know what's best. She along with the nurse convinced me to take something to help me relax and that I wasn't going to get chemo today because there was something going on with my blood and the chemo has been postponed. The nurse told me that the on-call Dr. would be in as soon as the new numbers were back.

Well, shortly after I was able to relax and fall asleep, my very small treatment room was suddenly filled with 2 doctors and 3 nurses. They wake me to begin to tell me that my Triglycerides as dangerously high and this is the reason they can get my labs. I have so much fat in the blood that they can't see the other cell to get an accurate count. Then the Dr. says we are going to have to admit you to do what is called a Blood Exchange, this means hooking me up to a machine and taking out my plasma that is full of lipids (fatty cells) and replacing them with clean cells. He say that I will have one treatment tonite and then another one the next day and I should be able to go home after that. Well about that time I was about to go postal, mom speaks up and asks the Dr. to go over it again, so while he begins again to explain what is going on 2 nurses from the donor center do what is called a vein check on my arms. The doctor said that my numbers have gone from 900 on Monday to over 4000 today. It is called Hyperlipidemia and if it stays that high Tyler could become very sick and have several complications. He said that the chemo that I get in my thighs is the one that causes this and that we need to act quickly. Well fortunately I had good veins in both arms and the to blood donor nurses say that I won't have to be admitted and that they can do this as an outpatient procedure. Today and then again tomorrow. This treatment is very effective in bringing down the counts quickly.

Off to the donor room via transport. Within an hour I was hook up to the blood exchange machine, I am to lay still and keep both of my arms completely still for 3 hours.  No problem, with the help of the anxiety med I was able to nap to pass the time while the synthetic (8 units of albumin) were going in and then just before the 4 units of donor plasma was to go in, I was given Tylenol and benedryl. So, I was pretty comfortable despite all of this and then I began to itch, I was having an allergic reaction to the donor plasma, Mom said that it had to be the one unit that was "O Negative" because I am "O POSITIVE" and choose not to be negative. So my body did not want any negative to be able to take over. I broke out with some hives and was immediately given even more benedryl which totally knocked me out. I guess it was about 8:30pm that we were on our way home. Mom called Hungry Howies pizza from the parking lot so that we could pick up the pizza on our way home and she also called Kent to meet us at the house. I was very medicated and she needed back up to make sure that I made it up the stairs to my bed safely.

Friday, August 19th, up at 8:30am to head back to COH for my second blood exchange procedure. Labs were drawn and then I was hooked up again to receive the same amount of Albumin and donor plasma and after having a little trouble getting my veins to cooperate the process went almost exactly as the day before with on exception, they had to pull one of the needles and restart it because the vein was not cooperating and YES, I did have the same reaction to a "O Negative" donors plasma and ended up with hives and needing some hydro cortisone. About 1:30 I was headed over to the clinic for my follow-up doctors appointment. The good news was that the first exchange brought the number down from over 4000 to 1100, I was going to only need a blood transfusion for the clotting factor in the blood and that they would be postponing my chemo until Monday, so MY doctor could take over. I was going to get the weekend off and the doctor put it but my numbers are way to low in order for me to even get chemo at this point.  YEAH !!! get me out of here. Mom stopped and got me some lunch and the minute I got home I headed for my refuge, The Pool Hall.

I realize that this was quite long and it was the short version of all that did happen. So thank you for sticking with me and allowing me to get all of this here on the blog. It will be a day in this journey that I will have to say, I am glad it is One Less that I have to go through. Thank Ü

Here are my last counts:

ANC: .6

WBC: 1.7

RBC: 2.71

Hemoglobin: 8.5 (not accurate because of the lipids)

Platelets: 260 (not accurate because of the lipids)

day 46 of 56...

yes, another update...

I am still in-patient, actually about now I'm pretty im-patient. Today is my 10th day straight in just being here in the City. I have been trying to bribe the doctors to let me out and they are just smiling and closing the door. I have high hopes that Monday, my birthday, will be the day. My doctor will finally be back in town and I know I can talk her into it.

I have to admit that this stay I have felt the worst ever. I had a fever and headache for 3 days, which requires multiple kinds of antibiotics which in turns creates nausea and stomach issues. I wasn't even hungry up until just yesterday, so it's been a great diet program. I have had a never ending supply of medications and drugs to try to ease all of my pain and discomfort. I have received multiple transfusions of blood and platelets and on Thursday, was given my day 42 of chemotherapy. What a disaster that was! I clearly was not on my favorite floor, the Ped's floor. The nurses on this 5th floor are not use to giving chemo from a protocol and therefore use that as their excuse in making errors. If it weren't for my mom here day and night to watch over me, I would have missed 2 different pre-medication, she had to ask why they weren't being given. The nurses did not know how to give the Chemo that is injected into my thighs. I asked the two nurses to inject at the same time and one of them went on 1 and the other went on 3, to which I replied, "at the SAME time please!" so the next two were at the same time but not without pain.

This stay as truly given an even worse reputation to Hospital Food, my order was never right! and as mom says, well the one good thing is, it gets you from one meal to the next. Thanks, Mom Ü  and Yes, as you can expect, Mom has sent an email to the "who's who" of COH, letting them know how much better the place would be for every patient, if they would just let her run it.

So even though this is a bit sarcastic, you all get the point. I'M OVER IT AND JUST WANT OUT!

my view for the last 6 days!

Here are my numbers as of today...

WBC: 1,3

RBC: 2.89

Hemoglobin: 9.0

Platelets: 64

until next time...

day 42 of 56...

well, I just wanted to give you an update. Last Thursday was my Ommaya port chemo for this round and starting that day I developed a headache and nausea that couldn't get relief from. I told them on Friday when I came in the clinic for chemo and they though it was because my hemoglobin was low. The gave me some medication for pain that really didn't do anything but dull the pain and on with this dose of chemo I get pre-medications to help with the nausea. They sent me home and hoped that the headache would correct itself. 

We came back for my Saturday dose of chemo and I still had a headache told them and they decided to give me 2 units of blood to help with the hemoglobin that was 7.3. They said that will help. I got my chemo and more med's and was sent on my way. We went home and we were going to spend the rest of my day with Grant, Jen and Christopher. 

Uncle time with Christopher, great medicine!

As the night went on I started to get nauseated and then then sick. From there I went up to my room and they all went down to let Christopher swim and have dinner at the pool. So, let's just say from then, it has gone from bad to worse. I made it through the night and back on Sunday to COH to get my last round of chemo for this week, still very sick and feeling lousy. Well, there was a lot of "observation" and not much action or treatment. Set home again, in order to return for an added appointment to get what is called IVIG. It is a blood product that helps boost my low count of immune stuff that should be in my blood. So on Monday, I received more blood and somewhere between 10am check-in and 6pm while receive another 2 units of blood I spiked a fever. I had chills like I have never had before and because of the fever I didn't receive what I came in for the IVIG. What I ended up getting was "admitted" and have been in-patient since. (Note: my biggest frustration is that all of this is happening while my Doctor is out of the office at a seminar, so I have been observed by doctors that really don't know my history and are doing their best to get this under control)

I have been treated with various antibiotic. Ones that fight thing from bacteria and fungus. Today, my fever is down and I did receive the IVIG and am still getting IV antibiotics with the hope that it will all work together to get me stronger and out of here for my 23rd birthday on Monday.

Not much good news I realize and as my dad would have said. "it is what it is".

until next time...blessings!

Here are my numbers:
WBC: 0.5
RBC: 2.88
Hemoglobin: 9.0
Platelet: 36

day 36 of 56...

delayed intensification...

hello to all...I realize now that this has turned into a way to keep track of my journey and also keep those of you who are faithful followers and prayer warriors up to date. So let me start by saying thank you for checking in and remaining on this journey with us.

this cycle of Chemo has brought it's very new challenges. It involves a being in the Out patient clinic 4 or 5 days a week for a minimum of 4 hours. It requires 6 kinds of chemo and steroids. One of the chemos that is called PEG (short name). It is the one that is injected into my thighs and in combination with the steroids has caused my pancreas to not want to do its job and therefore has cause a Blood Sugar issue. So I have been started on Insulin to keep it under control. This is a pain in the butt, I have to check it when I get up, before I eat, which is followed by a self injection via a insulin pen and then at night before bed which is followed by a different insulin injection, that is the long acting kind. This keeps my sugars more stable throughout the night. This is called situational because of the chemo I am on and my body is doing a better job each day at maintaining on its own and my need for the insulin has become less. The docs don't expect this to last, it just becomes a problem on certain chemos. God thing. 

Something else that has happened this round is that there is a lab marker that can be run to see how well my immune system is holding up despite the 3 antibiotics I take twice a day and it has dropped which is requiring me to add another whole day to this week so that I can get IV antibiotics to raise my levels and my bodies ability to fight of viruses.

This round has also affected my blood counts and zapped my energy and my hair. Despite all of this, I still push on and enjoy going to the local pool hall and play pool. It is something that I can do and really enjoy. I have join the Pool Player Association and play in tournaments on Wednesday nights. Being able to do this, makes the long hours at the clinic worth it. (kinda Ü)

So that's about it, here are my current numbers:

WBC:1.5

RBC: 2.69

ANC: 1.0

Hemoglobin: 8.7

Platelets: 47 then 70 after a transfusion (in order to get the chemo they have to be at least 70)

your prayers give us enough strength for each day...

New Phase - Delayed intensification...

day 9 of 56...

I am now in "Delayed Intensification" which will last 50 days. I will be doing this "OUT" patient clinic and I am going to do everything they say to stay OUT of the hospital. The schedule is pretty much going into the clinic at COH several times a week for chemo therapy or lab draws. Yesterday, day 8, we arrived at 10am and left at 4:30pm. Being able to come home and sleep in my own bed keeps me focused after these long days.

This treatment does include steroids which if you remember from my 'Induction" phase, has various side effects which are "I'm Hungry" all the time and it really causes my sugar/glucose to skyrocket. The steroids help boost my immune system and help with the side effects. I have had some pretty heavy chemo so far and it takes about a week to start having an effect on my body, so far I'm good!

So what have I been up to, you ask? On Father's Day weekend I reunited with some of my Camp family members. Yosemite Sierra Christian Camp sent their first batch of kids from Orange County to camp and I was there to see them off and this July 4th weekend, they will return and I will be there to send off the second group and see the various Staff members on Sunday. I am praying that during my small break between treatments in August, I can get up to the camp to spend a few days. Please pray with me! The rest of my days are spent playing pool, working with a guy that builds pool cues and just hanging out with my friends.
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NEW BUTTON!     "We Need Your Votes" (look to your right on this page)

My mom and a friend have created a project that will help Widow's called Kindergarten to College. Pepsi is giving away money for projects that Refresh our communities and their project has been selected for a possible $50,000 grant!

How the Pepsi Project works is just like "American Idol" or "The Voice" or "America's Got Talent", the project that gets the most votes earns the money. 
Please vote every day this month by any or all of these 3 ways:
1. Clicking the button to the right and "Vote for this idea" 
2. If you have unlimited texting: Text* 107533 to Pepsi (73774) to vote from your mobile. *Standard text messaging rates apply. 
3. If you drink Pepsi, look for the words "Power Votes" on the packaging or for a yellow cap on the bottles. There is a code inside the packaging or under the cap that you can give us Power Votes. So look for the "Power Vote" link on the Pepsi Refresh Project website give us your Power Votes from 5 to 100 MORE votes. You can enter up to 10 codes per day or just email us the codes and we can do it. 

The websites is makes it easy. If you have questions, you know the drill...send us an email. So spread the word and THANKS! in advance.

___________________________________________________________________________________

Here are my numbers...

WBC: 12.9

RBC: 4.34

ANC: 10.3

Hemoglobin: 14.5

Platelets: 191

Happy July 4th and love to all of you...

day 57...and going strong!

wanted to give you and update on my journey...

I am done with all to of the medications and chemotherapy for this IM phase of my treatment and now have until June 26th to strengthen my body for the upcoming phase of treatment.

I have had minimal side effects and managed to go in on a Thursday and out on Sunday of my last 24 hour (glow in the dark) high dose chemotherapy. I have to admit that my freedom did catch up with me, I caught a cold and have a cough! Let's just say that mom's not so happy about that! I can understand though, I don't want to have this turn into something worse because of my low immune system, nor do I want mom to end up sick. Sorry mom Ü.

We just got back from spending 4 days at Newport Beach, in celebration of what would have been dads 53rd birthday. He told us that if we wanted to be near him to go where there is water and because our place at the river is 4 hours away and my doctor does not want me swimming, mom rented a beach house and my whole family was able to spend some good time together right on the beach. It was a great change of scenery and the weather was BEAUTIFUL. We came home today and I am back to work, lol. I had a COH lab appointment today and will post my latest numbers below for you. 

I am really looking forward to this Sunday. I am going to go and be a greeter for Yosemite Sierra Summer Camp. I worked there last summer for and am looking forward to reconnecting with my camp family. The first of many 2 week camp sessions will be leaving from Irvine and I am so grateful to be able to help out by greeting the campers and their families as they are dropped of to travel by bus up to the camp at Bass Lake. I can't wait to get into my "I (heart) Love YSSC" t-shirt and help out. 
Yosemite Sierra Summer Camp website (click here)

Just a little note, we have been hearing from some of you that your comments are not getting posted and that is because, we don't seem to be getting them. We have only received 2 in the recent months. So, if you have posted a comment, please keep trying, and if you don't see it in a few days, please send us an email. I also wanted to say that your prayers are getting through and keep those coming also and from the bottom of my heart. Thank you!


My numbers as of today...
WBC: 2.9
RBC: 3.32
ANC: 1.7
Hemoglobin: 11.3
Platelets: 110

God News - day 38...

God has been so present since Tyler was discharged on last Sunday. He came home and things went pretty much as they had the last 2 times, he ended up with a little pain and minimal sores and we were able to take care of it all at home and NOT have to be readmitted. The way I see it, we will have it all figured out by round 4 which is next Thursday and then this Interim Maintenance round will be over. 

We have a church about a block away that we pass almost anytime we leave the house and it has a sign out in front and this week it read "Experience is what you get when you don't get what you want" which pretty much says it all.

Here are his numbers from this Thursday:

WBC:1.8

RBC: 2.85

Hemoglobin: 10

Platelets: 157

I was reading a devotional this week and meant so much to this mom and I realized this is how Tyler is living and fighting. With the childlike faith...

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Uncertain of the Next Step, but Certain of God
by Jon Walker

"I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven." Matthew 18:3 (NIV)

Oswald Chambers says we can be uncertain of the next step, but we can be certain of God.

When my son first started playing baseball, he was still relatively young and not used to a life lived around clocks and calendars. So it wasn't uncommon for him to ask, "Is my game today?" "How many days until Saturday?"

Jesus says this childlike nature is necessary to enter the kingdom of heaven. My son wasn't questioning if something would happen; in fact, he was confident that it would. But he was dependent upon my wife or me to tell him when it would happen. ?

Oswald Chambers, in My Utmost for His Highest, says, "The nature of the spiritual life is that we are certain in our uncertainty." He says we can be certain of God, even if we are uncertain of the next step he wants us to take. We can be certain of God's plan for us, even if we are uncertain of the specific details. Even though we're uncertain, we can be confident God will not disappoint us (Romans 5:5).

This also means we can release the things we have no responsibility for and stop worrying about them. For instance, my son could be certain I would get him to the ball game, but he didn't have to be concerned with how much gas it would require or how to get to the baseball field. He could just enjoy being a child and live in each moment, trusting that I was handling the details and that I would let him know when was time to go.

This is the childlike faith Jesus wants us to develop, where we grow confident each day that he will come through at just the right time and in just the right way.

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Thank you, from this mom, for continuing to pray for my family as we travel this journey...

day 29 of IM...

Glad to be back and to update you on all that happened while my mom was enjoying her Mother's Day gift.

This is so funny, I asked my "big sister, Alyson" (she was filling in while mom was gone) to send an email re-capping the last week and here is what she sent:

You came home from the hospital on Monday, May 9th.  (After chemo)  You were extremely tired, had fever & chills, pain, mouth sores again, and difficulty swallowing. Went back to COH Wed., May 11th around 6 p.m.  Were admitted and placed on antibiotics. Friday, was much, much better.  (That was after your mom told the doc which drug to put you on.)  You slept for a lot of Saturday.  Came home again on Monday, May 16th.  Is that what you wanted?  I tried to make it short and sweet for you.  :)  You have all the labs I believe.

This is an email project after my own heart. Direct and straight to the point. She deserves much more credit for all that she did than just this short email. She did a great job and I am so thankful for all that she did do. I didn't have one request that wasn't answered by her and she kept really good track of me. It's really nice to have a big sister. Mom thinks so too.

I want to say, Thank you to my brothers and to UP & AL (Aunt Lynette & Uncle Phil) for checking in with me. Your visits & texts kept mom happy and we all know that when mom is happy everyone is happy.

So, now for what's going on today. After having just 2 days of freedom and feeling normal, my labs were high enough and I was admitted on Thursday, May 19th at about 4pm for my 3rd round of the 4, 24 hour high dose chemos and this time the extra dose into my Omaya Port. I didn't get sick and have been doing better I think than the last round. The chemo runs for 24 hours straight and then they run fluids for 24 hours along with an antidote to the chemo, to protect what good cells I have. We are getting this 56 day, IM round under control and getting better at being pro-active with medications each time to prevent or deal with the side effects/affects. I'm hoping to get discharged on Sunday and not have to return for 2 weeks. Anyway, some time at home and feeling normal is truly a gift.

Well, that is about it for this update. Here are my numbers:

WBC: 3.5

RBC: 3.31

ANC: 2.1

Hemoglobin: 11

Platelets: 145

until next time...God bless!

(note: if you have left a comment on a past blog and haven't seen it posted, please email me and let me know. We might have a problem that needs to be fixed, thanks!)

Day 20 of IM...Happy Mother's Day

Dear Tyler,

Today being Mother’s Day, I wanted to say thank you and to let you know how hard it is to be away from you during this week and most of all, to thank you for giving me a gift of time, to recharge.

It is so hard to believe that you have been fighting for 4 months and how this new journey has changed your life. You have been through many surgeries, procedures, infusions or transfusion, x-rays, had blood drawn, doctors, nurses, valet attendants and hospital food and you have never complained. This is a journey that you never knew you would be taking and has changed your life so abruptly. It has taught you and you have taught me, so much about how to be Fully Reliant On God and His plan.

I just wanted this to be forever posted here on your blog so all of the mothers who are follow your journey know that your children can lead you through your toughest days. Your children can teach you things you never thought possible. Your children can keep you from giving up and encourage you to fight for what is right. Your children can make you laugh at just the right time. Your children are willing to listen to you when you need someone to talk to. Your children can make you so proud to be their mom that, you fight back tears trying to type the words to tell them how proud of them you are.

I love you Tyler and there is nothing more important in life to me today than being your Mom and being able tell our village of followers how proud of you I am.

I look forward to hearing about all of the things that have happened since I left. I will be calling you on soon. (make sure you have a copy of your labs ready for me, so I can add them to this post)

Happy Mother’s Day & a thank you from the bottom of my heart, to all of you that are at home filling in for me until I return.

ilym

His numbers for today…(to be posted at a later date)

LIGHT humor Ü (enjoy)

We have discovered how to make a Despicable ME!  - glow stick.


STEP 1:

6 BAGS OF HIGH DOSE METHOTREXATE

Step 2:

HOOK IT UP TO YOUR ARM

Step 3:

NOTE: GLOW ONLY LASTS FOR 24 HOURS, Ü 

Still in-PATIENT. Pain and infections are getting better.

Here are today's numbers:

WBC: 2.5

RBC: 2.5

ANC: ????

Hemoglobin: 8.3

Platelets: 70

God bless...

day 7 of IM... Easter 2011

just wanted to update all of you...

On this day of celebration of Jesus' resurrection, I ended up in the hospital. I had my surgery on Friday, and made it home and into bed by 7pm. My neck was sore and stiff along with my throat feeling swollen. We thought it might be because of the surgery so Saturday, we tried Tylenol, aspirin and pain meds and nothing seemed to keep me comfortable. By this morning I could hardly swallow and I was running a low grade fever. 

Mom jumped into action and call the after hours hotline here are COH, (its called, the ETC, emergency treatment center, note: it's NOT an emergency room.) she and I answered all their questions and told them all that we had done to manage the pain and they told us that they would call the On-call doctor and call us back. Well, they did call back and told us that they wanted me to come in so they can see me. 

We got here about 1:30pm and they began running a lot of test like: a chest x-ray, blood draws both from a stick in the arm and also a stick in my new portacath, a urine test and a nose swab. After just a short time they started me on antibiotics based on what they saw on the chest xray and then told me that I was going to be admitted because my throat was really swollen, red and showing signs of breakouts and they figured it was going to be worse before it got better. They also said that they have better ways of treating it and better drugs for pain management. They can also keep me hydrated and fed via liquids better, OK? So, I am in the right place. Laying in bed looking up to my Father that I trust completely to know what is best for me and then out the window in time to see a jet stream and knowing that my dad is right here with me.

Mom, made a made dash to Wally World for hospital wear for the few days I may be here and also to buy some cup-o-noodle and mac & cheese, my anytime snacks to say nothing about the fact that she knew it would be warm for my tummy and easy to swallow. I have really been lucky not have this mouth issue sooner because the mouth cells are the first to take a beating and they are the first to be irritated and also the first cells to heal. So, for that I am thankful, or at least I will be once they heal.

Anyway, that's about it from here, enjoy your family's and all the food that they brought with them. Thanks for your prayers and staying with me on this journey.

Happy Easter! He is Risen...(tell a Friend!) that's for your Mike B and in memory of Mr. Wallace.

day 4 of IM...update 4/22 6:30am

well, we have God news and not so good news...

The God news is that my blood levels stayed high enough and I will be able to get my Port-A-Cath tomorrow, Good Friday @ 12pm. This will be replacing my pic-line and give me the freedom from having to have the tubes hanging from my arm and will eliminate the chances of another infection, dressing changes, covering it to shower, having to have it flushed each time it needs to be used. FREEDOM!  The Port-a-cath will be under my skin in my upper chest. Then when it is needed, they will insert a special needle, which will give them complete access to the vein for drawing blood and giving chemo or blood products. YEAH. Thanks for your prayers.

Now for the not so good news...

This high dose treatment kicked my butt today. I have had aching in my legs and they have not been able to control that pain and I have been nauseated so I couldn't eat my burrito that mom brought me from Chipolte, (my favorite food). I had to settle for a sip of Sprite and 2 soda crackers. I finally managed to get to sleep about 3 this afternoon and mom is standing guard outside my room to keep out all disruptor's (not sure that's a word, but it works). So, "note to self" Round 2 - stay on the anti-nausea medications for one day longer.

Here are my surgery worthy numbers for today, thanks to all of YOUR prayers...

WBC: 2.7

RBC: 3.3

ANC: 1.6

Hemoglobin: 10.6

Platelets: 117

The doctor said to expect these to start dropping after day 5 or 6. We'll deal with that later!

So until next time, Happy Easter Weekend! He is Risen! Tell a friend Ü

day 1 of interim maintenance...

I know it's been awhile... let me catch you up.

My counts were not high enough to start this leg of treatment last week, so I spent the week feeling tired, yet able to do things that made me feel normal. I hung out with some good friends, watched while my buddy's worked on their car, played some pool and watched a few movies. And then came TODAY!

My day started at 10:30 at COH in the regular blood draw lab because the problem I have been having with my pic line ended up just as mom had predicted and was doing everything from flapping her arms to standing on her head to get them to take notice. On Friday, it had to be removed because of a rash that is a fungal infection on my arm and they were afraid that it would get into my arm and that wouldn't be good. So they had to pull the line and order cream for the rash.  So today I had to get my blood drawn like everyone else.

After that I went to see my doctor and my blood levels were high enough so I had the Bone Marrow biopsy that is needed at this stage. After that I went to admitting and was taken to my room on the 3rd floor. 

At about 2pm the pic nurse came in to put a new pic line in my right arm, that went very smooth and now I was ready to start the 6 hours of hydration before the chemo.

Right after that procedure the CHARGE nurse comes in to tell us that we are being moved to another floor because they needed my bed. This was about an hour prior to another IT chemo procedure. REALLY? Then right behind her came the nurse to tell the Charge nurse that Dr. S wants him to stay in this room until after the IT chemo, so I was given my premeds and began the wait prior to the chemo wondering if mom really did find the solution so I would avoid getting sick. 

After the 30 minutes plus had passed the Dr came in and started prepping for the procedure and by then I was so pre-medicated I couldn't stay awake, it concerned the Dr because at times I was even snoring. Ü So, I am happy to report that I slept through and didn't have any sickness. God news! in fact they came to get me in a wheel chair and moved me to my new room on the 4th floor and I climbed into that bed and slept until 7:30 when my mom woke me up to eat dinner. Then back to sleep and waking up only to have the nurses take vitals.

So at 11pm, I was pre-medicated again and my 24 hour IV chemo therapy (high dose Methotrexate) started. I will be drifting off to sleep watching "Dinner with the Schmuck's". And just like that last time I was in-PATIENT, my output has to be measured and tested to make sure that my kidneys are functioning and this chemo flushes through without causing further problems. I will be here for 3 or 4  days for hydration and lots of labs to make sure that this moves through my system.

This treatment is the same treatment, every other week for 8 weeks. Yippppeeee! 

So, that's it. 10+ needle sticks, 4 different procedures and lots of sleepytime medication. 

4 less procedures & Good Night!

oopps, here are my numbers for today...

WBC: 2.2

RBC: 3.7

ANC: .8

Hemoglobin: 12

Platelets: 124

day 50-54

Happy 2nd Birthday, Christopher, love Uncle Tyler! See you Sunday at the park.

well, this week went very much like clock work, we spent long hours on Monday and Thursday which was my last week of the Consolidation Phase. Monday I start the third phase, Interim Maintenance. I'll explain that phase in just a minute.

As if all of this treatment was not enough, I had an added adventure yesterday, it was called "ingrown BIG toenail surgery" ouch Charlie! My mom has been my podiatrist since I all of this began and she has been doing a great job at restoring the health of my feet. (Only your mom can stand the smell) She was really successful at getting my nails grown out and my feet healthy but despite all of her hard work, she realized that she needed to call in the doctor on one of my toes. My doctor took a look and told us that there is only 1 podiatrist in the clinic and very hard to get time with so she suggested we get it looked at outside COH because she agreed it was not looking good. Mom of course did all the research and wheeling and dealing with a doctor on my insurance plan and managed to get me in on the same day, yesterday. She left me in the car while she filled out all of the much needed paperwork and this was to minimize my exposure to any possible germs in a waiting room. We then waited in the car until it was my turn and as the doctor began to explain what needed to be done, I wanted to get up and run. He said that it wasn't going to get better on its own and that he felt it had to be removed. I wasn't happy and tried to explain that it did hurt that bad. Nobody was listening! So, to any of you who have had this procedure done, you feel my pain and I don't dare put all of the details on here because my brother Kent told me he has the same problem and if he reads the details he will never get his fixed. It was kind of cool though, the doctor gave me the piece of nail that he cut out, along with his card, to take to show Kent at my nephews 2nd birthday party this weekend.  Ü  Anyway, today I am better and mom is doing the aftercare that needs to be done twice a day. Just another thing added to my care plan that she keeps such good track of.

So now the explanation of "Interim Maintenance"

It, like Consolidation , is 56 days (8 weeks). This Monday will be day 1 and I will go in first to have my labs drawn, then the results will go to the Study Guru's to decide is I am able to start this next phase. Meanwhile, I will then be prepped for a Bone Marrow Fluid and bone draw which required as the last procedure of Consolidation. This will tell us if there is any residual of the leukemia. Remember it was what needed to be, less than 1%. It just has to be drawn and the results are not necessary to move on to phase 3. So, after that and any blood products I may need, I should be admitted into the hospital and will be given chemo into my Omaya Port and then the same chemo through my IV for a 24 hour period. I will then stay in the hospital for about 3 or 4 days in order to be given what they call and antidote to this chemo in order to protect my kidneys and to make sure that it gets flushed through my system without causing any other trouble. Along with that comes the input/output checks and various anti nausea meds that I might need. Once I am discharged, I will go home and only come back the next week for labs and blood products if needed, only to go through the same thing 3 more times. So every other Monday I will be admitted into the hospital for 3 or 4 days for the next 8 weeks. 

There you have it...we will keep you updated as often as we can.

I look forward to being with my whole family on Sunday to celebrate Christopher's birthday. Nobody does birthdays better than the Fletchers. I'll be sure to post pictures for all of you to see. So for now, keep praying for my family, words can't express how grateful we are for each one of you.

Here are my last numbers:

WBC: 1.4

RBC: 3.1

ANC: 0.7  UGH!

Hemoglobin: 10.0

Platelets: 199  YEAH!

Neutrophil: 47.6

Fibrinogen: 134

Glucose: 74