Wednesday, November 30, 2011

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...

Saturday, October 29, 2011

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

Sunday, October 16, 2011

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.


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

Tuesday, October 4, 2011

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...

Sunday, August 21, 2011

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)

Sunday, August 7, 2011

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...

Wednesday, August 3, 2011

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

Saturday, July 30, 2011

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:
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...

Friday, July 1, 2011

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.
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...

Monday, June 13, 2011

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

Saturday, May 28, 2011

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

Friday, May 20, 2011

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!)

Monday, May 9, 2011

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.


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

Tuesday, April 26, 2011

LIGHT humor Ü (enjoy)

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



Step 2:

Step 3:


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...

Sunday, April 24, 2011

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.

Thursday, April 21, 2011

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

Tuesday, April 19, 2011

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

Saturday, April 9, 2011

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

Monday, April 4, 2011

day 43-46...

Sorry for the update delay, the ghost writer was putting together her view of our time together. Thanks for your patience.

Thursday, March 31, 2011

Well, I’ve made it through another week with God’s help.  Monday started off with low numbers, so I needed blood products. I also received the chemo I was scheduled to have. As always, Mom was watching to make sure all was done correctly. Thursday brought another day of low numbers. I ended up receiving blood products again today. Mom was taking a much-needed rest, so she called in the B team, Aunt Lynette. We watched some T.V., and Aunt Lynette was entertained with all the procedures. She’s still a rookie!

It made for some long days in the hospital this week. I’m thankful that I’m still feeling pretty good, just tired. I’m looking forward to a good weekend, visiting with some friends and then starting a repeat of this week’s routine next week.

As always, I’m grateful for your company on my journey. Keep those prayers coming.

Here are my labs from Thursday:
WBC: 1. 7
RBC: 2.19
ANC: 1.0
Hemoglobin: 6.8
Platelets: 22

Aunt Lynette’s 2 cents!

What a great experience Thursday (3/31) was! It was fascinating to watch all the procedures. Tyler was bored with the whole thing, but it was new to me. My day went very fast! ? So many blessings filled that day:
•    Tyler was healthy enough to walk into COH on his own! PTL
•    He knew exactly what he was doing, what to expect, where to go. I was just blessed to be a second set of eyes and ears for the day.
•    We had our own room. Tyler knew exactly which room he wanted and politely asked for it. Smart boy!
•    His nurses are delightful, humorous, patient and kind. You can tell they like Tyler! (That didn’t surprise this Aunt in the least!)
•    My wonderful nephew watched I Love Lucy and cooking shows with me! How sweet was that? Laughter was the best medicine that day, for sure!

I am so grateful for the time I was able to spend with Tyler (and would do it again in a heartbeat). I am proud of how he is traveling through this unexpected journey in his life. He’s a good man. I couldn’t love him any more! Thanks for sharing your day/journey with me, Tippy. 

I love you bunches! 
Aunt Lynette

Sunday, March 27, 2011

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...

Thursday, March 17, 2011

day 29-32...

let's just 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

Monday, March 7, 2011

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

Wednesday, March 2, 2011

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...

Friday, February 25, 2011

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

Tuesday, February 15, 2011

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. 

Wednesday, February 9, 2011

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...

Monday, February 7, 2011

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..