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Beginning Our Journey
Aug. 7, 2009
Prayer request for Tristans blood counts.
Please pray for Tristans blood counts to go up. We had them done at clinic in July and his ANC was 300. So they had us stop meds for the weekend and start again on monday. We got our blood counts today and it went down further! 130!
They want it 1000-1500.
this is basically telling us how his immune system is. it is a combo of white blood cells and something else.
So under 500 he is homebound. We have been for 2 weeks and now we get another week.
Sigh. Please join with us in praying his counts climb back up where they need to be.
Thank you.
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Apr. 2, 2009
more pictures
Apr. 2, 2009
pictures from Make a Wish
Apr. 2, 2009
Make a wish trip
I have so much to comment on it is unreal!
The people. Just thinking about how awesome the people were to us. I wish it was like that in real life. That is so what heaven is going to be like. Just magical. They treated us like we were the most special family on earth.
Justin is dead set on paying off our bills and volunteering there someday. Now I am not sure about the florida weather as a home. Not for me... Saturday was 90 and humid! I was happy to be leaving that! and that was only March!!! not the place for me. but man was GKTW a magical place and I would not mind being down there someday volunteering when the kids are older!
ok. well before the trip Dad and I BOTH double checked to make sure we did not need birth certificates for our kids. We also doubled checked Wyatt was listed as a lap baby for us. So they cannot say they did not know we had one. They said nothing for kids under 18 as long as we had our id. So I did not bring it because why would I? I am sure you can imagine what happened... Needed Wyatts BC! The lady was so rude! Saying tough luck. Alyssa was bawling. The make a wish lady was like "surely there is SOMETHING that can be done" The lady was like - you have to buy a ticket or get a $10,000 fine! Finally after a good scolding to us for not having it, and a promise to have Justin's mother fax it she let us on. Said if we did not have it in orlando there was no getting on the plane. I was so annoyed because she treated us like crap when I CALLED and DAD CALLED and Specifically asked!
So we get on the plane and everything is going nice and fine.
Then during decent Alyssa started bawling holding her head saying it felt like a knife was cutting her. She was fine going up. But going down she cried so hard.
We get to give kids the world and she is STILL crying holding her head flipping out.
So off to the ER we go. At the ER They said she was NOT on our insurance and were demanding her social security number. Well I do not know that. we had her insurance card!  My parents took a $47 taxi to get to the Er to help us because we had orientation at GKTW where we get tickets etc and had to do it. Back to the insurance card. They still rejected it and said she was not on our plan. Wanted paid for services. Justin handed them a $50 and said this is our ER co-pay. The lady said she never heard of an ER copay and was not going to accept it because they did not take cash did he have a credit card. Justin said - I am NOT giving you my credit card! you will bill me the whole $500 she wanted. She was hot. So of course she let him sit FOREVER before being seen. Finally another lady said - "they are from Make a Wish on VACATION you have to get them in to be seen!"
So finally around midnight they were home with amoxicillain.
Next morning... chef mickeys. AWESOME!!! Wyatt was being sooo fussy. Fevering really good.
we found an urgant care for him. Day 2, second amoxicillan. I was just feeling like a bar in the morning. Lining up shots of medicine between the two kids and Tristan's normal meds.
There is just no words to describe Give Kids the World. It is all about the people. The place is Magical. There are volunteers EVERYwhere and we have full intentions of being one someday. I especially loved the ones who shared with us their own stories and said they had also stayed once and were back to volunteer.
Where else in the world would you do this... in the ginger bread house for dinner Justin was in line, I had the kids at the table and Alyssa had to pee...The volunteer offered to sit with tristan and Wyatt and I LET HER!  And the first night while Justin and Alyssa were at the Er, Tristan wanted to ride the carousel and the ladies running the ride kept Wyatt while I rode with him And FOR REAL! that was fine! It was so safe there!
When you go to dinner at the ginger bread house (which I liked Katis Kitchen better for the food but for having the service at the ginger bread house we ate there most) your trays were wisked away from you and carried to your tables, your drinks were carried, the kids were taken care of, if you needed anything!
From the website, I thought GKTW would be cheesy. Oh my. That site does NOT do them justice!!! When we were at Disney, my kids asked "can we go back to GKTW" each time! And I was happy to do that. I did not feel like we were missing anything by cutting the parks early and coming back.
Another thing that was awesome were welcome back families. GKTW welcomes you back. And they really do! We met some really great people and heard their stories.
Each night there were different activities and the funnest was Village Idol! My kids signed up and were #20! I did not think they were going to be awake long enough. well They were. They sang Phineas and the Ferbtones Bow Chicka Bow wow. LOL and dance (well Tristan got them walking in circles) around on stage. Everyone was clapping and singing with them. Tristan sang louder then Alyssa! Then when they were done, they had them sign autographs outside. They had paper and lined them up. All the volunteers were coming up saying Alyssa - can I have your autograph. And Tristan wow you are a star! Alyssa was AMAZED that they wanted her autograph!! Tristan proudly wrote T's for everyone.
And it was great because the rest of the week, we saw the "kid who made the funny faces" or the "boy who jump roped" and everyone knew my kids as the "bow chicka bow wow" kids!
Alyssa's favorite part was the La Ti Da Spa. Tristan's.... not really sure but ordering pizza to our "house" and ice cream.... you know I think his favorite was the huge train set. yes that was it. The boats were really cool too.
Wyatt LOVED the Carousel.
From Burping Wishing Wells, Bunny Tuck Ins, Dino Putt Putt, Carts that drove around and gave you lemonaid and cookies, Swimming pools with water shooters, rides that "did not take money!" Santa Claus who let you pick from a wall of toys, air brush tattoos, presents in your house each day! (I am talking 5 dvds at a time, GKTW candy land game, 5 more dvds, camera/photo album/pens, stuffed animals, duffle bags, christmas ornaments etc etc) characters showing up there.... the kids were spoiled and so were we!!!
My parents and my brother and sil were able to visit. It was so nice. They really enjoyed it. Mom cried. So did I a few times. It was just sooo special. So special.
a few more random things because I just cannot process it all...
Alyssa got stung by a bee playing on the swings. The weather was beautiful!!!!
We got to pet dolphins. Tristan did not get a good pet, he was short and we fed them but I was afraid of him leaning to far over and falling in. Well the worker there said "did everyone get a good feel?" I said well he was kinda afraid. He jumped when they "talked" and did not touch. she said - oh no. hold on. Got more fish and helped him and Alyssa really get a good feel. It was awesome! They also fed sting rays.
pictures in the next post...
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Mar. 10, 2009
Some Tristan Updates...
Urgh... this morning I sent Tristan upstairs for his legos. I was being lazy and not wanting to get them for him when he asked. So I said, "I will stand at the bottom and you go get them." He said, "Ok mommy, did you know my knees hurt when I do?" .... oh no....
Tristan is on a steroid called Dexamethasone. It causes joint pains. They actually stopped using the steroid on new patients but since Tristan is past the HARD month long uses and down to the 5 day stretches, they continued him on this drug.
So far he has not mentioned any pains so I figured we were lucky not to have that side effect.
I was so sad this morning to hear that indeed, he is experiancing it. Now I know I have to watch him more! Because he carrys things down and up the stairs all the time. We have a full flight of stairs and a little half set to get up stairs. Big old house. If he would fall.... shudder.
But on the good news... Clinic went well. Tristan's Doctors said his counts once again were beautiful. A little TOO pretty and that most likely next month they will be upping his dose of chemo. We have already raised it 2 times. So now we will raise it up again. They want to artificially keep his counts low.
We leave the 22nd for our make a wish. please pray for our trip safety.
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Feb. 7, 2009
Tristan's Clinic Appointment Yesterday
We had some really positive feedback from our oncologist yesterday. We normally see the resident but the head oncologist came in to check on Tristan yesterday. We were asking her questions about his face rash and now one on his foot. While she was in there she commented that Tristan amazes them. She said normally kids go up and down in their counts but he is staying STRONG the entire time! Not once yet have we had to take him off his meds. She said it is VERY common to have to stop meds and wean back on to them. Sometimes for weeks at 25% strength. But Tristan is amazing and handling the meds great! She said he is doing so well and they are so proud of him.
All Glory to God!!! I know why Tristan, our strong and mighty boy, is doing so well. THANK YOU ALL for the many prayers that are keeping Tristan going strong and sailing through his treatments.
Here are a few pictures of Tristan and his resident oncologist Dr. Terri (who we love to share jokes with)  
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Jan. 1, 2009
Please pray for Tristan
Tristan has not kept anything down at all today and he was just sick. So Justin took him to Children's. His fever was 102! So please pray for Tristan that it goes down and he is feeling better soon. I also am not feeling well. so keep me in your prayers but Tristan needs them big time.
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Oct. 19, 2008
Looking Back... One Year Ago (lots of pictures post)
One year ago today, Tristan was diagnosed with A.L.L. Leukemia. I thought I would sample some of the pictures from over the year...
Here is bubby when we first were at the hospital. He LOVED to make tents and the staff at Children's never knew where he was going to be in the room!
  Not long after we returned home, Tristan had to have his head shaved because it was all over his face every time he would lay down. Getting in his mouth etc.
It did not take long for the steroids to kick in big time and plump Tristan way up! Our Thanksgiving was very interesting! While we cut up bread for stuffing, Tristan was stuffing his face! He gave us many laughs that day!
 He was not very fond of Clinic Visits at first.
 It took a lot to get him motivated to get up and move. Daddy would try to get him playing wii.
 That round of intense treatment was over and Tristan started to slim down again.
January 2008 -
 This year, Tristan spent his birthday having Red Chemo pumped into his little body. Day one of delayed Intensification.
  as we made our way into March, we tried to get him outside any nice day we could.
 April brought us our second half of this round. His hair was lost and we got the slick bald look. A few clinic times we came home with his mediport accessed and had home nurse treatments.
  April 22 we Made it to Maintenance!!!
 April 29th, Tristan got to go back to church. He got to meet his new teachers and classmates. He sure does LOVE sunday school. Even today he said how he could not wait to go to church tomorrow.
in May Tristan's hair started to grow back in.
 June brought lots of interesting things for us. From Cancer Walks to Hospital days at the zoo,
   July was a spinal tap month
 Then on to August
 in September WDVE was at Children's
And this brings us to a year...
Clinic last week
Tristan still goes through daily chemo, Weekly extra chemo, three times a week antibiotics, once a month clinic appointments, every three months spinal taps. We have a long road ahead of us still to go. But God is sooo good! We have been blessed beyond belief with our little guy. He is a fighter and God has been there with him the whole way! It is amazing how our lives have changed this past year. From chaos to routine.
We appreciate all the love and support and prayers from all of our friends. Please do not forget Tristan when you think about him. We anxiously await the day that we can tell you all Tristan is 100% Cancer Free! Cured!
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Oct. 10, 2008
Clinic Day today.
We had a really nice day today. Tristan cried when they accessed him, it is so hard. one person has to hold his feet, me his arms and the nurse accesses him. Then she makes him lay until she is done drawing blood because she gets a better return and he just wants to sit up and put his shirt back on. it is rough.
But he did SUPER for his spinal! They only gave him a half dose of loopy meds. this time - and he did better then normal! And he was pretty looped up. He was making me laugh because he was talking slurred and he says "why am I talking like dis?" you had to hear it. And he actually laid down for 45 mins after his spinal! Normally we FIGHT him to keep him flat for 15! They want 30.
he got his flu shot in his legs also and did not even flinch.
He is so sweet. All the kids in clinic today got stuffed cancer.org daffodil bears today. he cuddled it the whole time.
Then when he picked from the treasure chest of toys for spinal tap and blood transfusion days, he picked a baby toy out for his brother! What a sweetie! He already has been playing with them (linking chain things).
His ANC was low but they said that is because we upped his meds. It was only 800. It has been 1500 all maintenance and 1300 last time.
   
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Sep. 30, 2008
Tristans bed head.
Sep. 12, 2008
Children's Hospital Today
Today we had a 9:30 appointment at clinic. Tristan did soooo well! His ANC was 1,300. That is about 200 lower then before but that is why they upped his meds. That is what they wanted to do. Drop it down.
I am so proud of that little guy. His normal nurse was not there and he cried a ton with the new one. But it was quick and over quick.
Then we had time to kill between his clinic and his cousin Emi's dentist appointment. So we went down to the WDVE Radio telethon for Children's. My mil LOVES that station and was very excited they were there! She gave Tristan and Emi $ to donate. Tristan's picture was on their website. and funny enough, I was hanging out in the back because I was not even going to go in, I am way too shy for that stuff - I know you do not believe me. But my picture made it on their site too! that is me way back in the corner by the door :)
Here is the picture I took just because I knew my mil would want one :)
We then went to Emi's appintment where the poor thing ended up with her tooth pulled.
It was a nice day but a long one. Tristan also started his steroids for a 5 day stretch today. And it is his big chemo day. He took 9 1/2 pills today plus his bactrim syrup and his allergy meds. That boy is a GOOD boy.
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Sep. 11, 2008
Quilts for Leukemia
Not sure what my kids did to my camera but the settings were all messed up! I took some pictures of Tristan opening his mail/package today and they all came out blurry.
We were blessed to receive a quilt from Quilts for Leukemia.
It is perfectly beautiful! Very "manly" looking for my strong and mighty boy! He loved it! Here he is hiding from Grandpa in it right away. Everything is a tent with this little guy.
The other day I was printing out blog posts for a binder. Just to have them and read them offline etc. I was reading how "I wish for my boy to be normal again, to be jumping off my couch, ripping down my curtains and just being the boy he was" When we were going through a rough spot in his treatment. I want to tell everyone who prayed... your prayers were answered! Tristan makes me cringe all the time when I turn around to him flying from couch to love seat, or I hear him call "mom, I am doing something dangerous!" He is a total boy! And I thank God every min for it!
Tomorrow he goes to clinic. I have a trick I use. His sister spends the night at my moms because we leave early in the morning. I let him sleep with mommy and I take his shirt off to sleep. And then make sure he is warm of course. Then in the morning before he ever wakes up, I slap the numbing cream on his mediport. It is the easiest way I have found to get it on him without a meltdown. Sure, it is a rude awakening for him, but it does the trick. Anyways, here he is sleeping in mommy's bed with his new quilt.
And then I took close ups for everyone to see.
 
I think it is just perfect! Something he can cherish when he is older and looks back on his miracle of a life! Because it is such a nice color/design. Thank you very much Quilts 4 Leukaemia!!!
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Aug. 29, 2008
Tristan Updates.
Wow, three posts in one night!
I got this shirt from an online friend, Tanya while back and I kept forgetting to snap a picture of Tristan wearing it! So here it is for everyone - Since the board we post together on is down!!!
It says BE Greater Than Cancer.
Poor Tristan is suffering from allergies big time lately. Dr switched him to Zyrtec from Claritan. It seems like it is helping some but he is so stuffy and his eyes are puffy. I know it is not a cold because there would be no way the rest of us had not caught it. Dr checked him and said he is sure it is allergies. He had to get a finger prick today. He did super good. He flinched but kept right on talking. The nurse was surprised he did so well (this was not at Childrens) and I said this is NOTHING for him!
He is doing really good though. He was in the 94% for weight today. But it is because of his steroid chub I am sure. The kid can slim down but every month he is getting steroids. He has no chance to be that much smaller. And he was 85% for height.
Next clinic date is Sept 12th.
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Aug. 22, 2008
Tristans drs appointment today and updates.
I had to take Tristan to the drs today. He has had a good cold for a few days and last night he got the barking seal cough. With today being his super chemo day (once a week we add a half more 6mp pill and 7 methotrexate pills) I was worried about him over the weekend. Dr Trotta seemed to think it might be allergies since under his eyes were dark and he was blinking. I told him I have been giving him Claritin all summer and feel like it is doing nothing. I feel like I am giving it to him as a waste. He told me to switch to Zyrtec and to use this 12 hour cough syrup if he is coughing. So I got that all. Hoping to see an improvement.
We did not do any school today. I did pick up more school supplies at Walmart today. You cannot beat 16 cent crayon boxes. I mean come on. I can throw a pack in my bag anytime we go somewhere so conviently! I love it! And then the glue that is like what 17 cents? The rate my kids squeeze glue on that is awesome! And I snagged a few packs more of pens for me. I love knowing my pen is not dying. And figured I can always use pens. Oh I got two more packs of markers too. The rate my son leaves caps off. 
So anyways... We are on the down hill with his steroids. He is chunked way out! (If dad sends me pictures from last night at his house I will post them) So he is an eating machine. But I know we are on the way down because he wants food out of habit all the time. But if I am stern with him saying no you have had enough, he does not flip out. So I know a few more days he will be back to eating normal. It is crazy the ups and downs his little body handles/goes through.
I think I need to have two piles of clothes though. Steroid clothes and non steroid clothes. Because mom says his undies are too tight and I should get the poor kid bigger ones. Well just a few weeks ago they were loose! And I guarentee they will be again here at the end of the month! It is crazy! With their bodies being so little you can really notice a couple pound weight gain yk?
Anyways. I have to check on the kids. Just wanted to give and update.
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Jul. 23, 2008
Just for fun
Jul. 23, 2008
What is keeping me so busy I do not have time to update my blog
Wow... I am busy! Justin has "praise the LORD" switched shifts back to the 5 o'clock start time. It is really nice but my computer time is more limited now. But it is a much nicer shift for our family! Thank you everyone who was praying for the change for us!
Add to that... my wonderful husband decided to get us a pool! Which is awesome but MAN does it take up our time and energy! I have two little non-swimmers in floaties who want to be in from 6 am until bedtime but only stay in for half and hour to an hour. Get out and want in later. So 3 or 4 times a day I am in the pool with them. Sure I could say no but they really love it. And I like it too. Just wish they STAYED in longer. Ok, Alyssa would. Tristan is who gets tired of it. But being so young, everyone is in or out.
So that leaves housework. Do not want to do it in the afternoon when Justin is up because that is family time for a short while he is with us. So I am stuck with housework at night. My normal computer time!
We also had a really nice weekend. We went berry picking together. Then to the drive-in to see two movies. Wall-E and Kung Fu Panda. We like them both! I think Tristan likes Kung Fu Panda better as he slept both times we have seen Wall-E now. But he was all about the panda. A Great site to check out movies we like is Christian Spotlight on Entertainment If you are ever wondering about a movie and is it a good one to see, this is the site for you to check out! We do not watch anything without checking here first.
Tonight my uncle, aunt and cousins came over. We had a nice night of swimming, McDonalds (SORRY MOM! THE KIDS PICKED - shhh we are supposed to be boycotting it I hear) and bowling.
Here is Tristan with my cousin Charlie and my uncle Joe.
Bowling
So that is what has kept me super busy lately. We had clinic last Friday. Here are three pics from clinic.
First one is the kids in the waiting room. Notice Tristan's arm? He always covers his port with his arm like that from the moment I put his numbing cream on in the evening until the next day!
Here is mom with Tristan. She had to come this week with me since my mil could not get off work this week.
And last, here is a picture of Tristan loopy after his spinal tap.
Sorry so long! I will try to keep up better with smaller posts and more of them if I can! Try is the key word :)
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Jun. 21, 2008
Things I never thought would be happening to us...
My friends just keep blessing me more and more. Thank you to everyone who had a luminary or balloon in honor of Tristan at this years Relay for Life's around the US! I posted a picture of our dear friend little Philip and his mom with one for Tristan. They are from Texas.
We also got pictures from Oregon and Maryland too! My good friends Larisa and Kym each participated and showed me a picture.
It is such a great honor to have such amazing friends.
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Another event that we just went to last night, that I never thought we would be apart of was this years Dream Night at the Zoo sponsored by Children's Hospital of Pittsburgh.
We had a great time! It was after the zoo closed, all these amazing kids were able to have a nice night out. There was free Carousel Rides, Free Train Rides, Free Cotton Candy, Behind-the-scene tours, live animal presentations, Bio-fact table, Fire Breathing Entertainment, Face Painting, Stingray Touch Tank, Strolling Puppet Stage, Free Safari Cars and Log Rides, and Mini Sundaes.
We did not have time to do it all! It was such a nice night.
See Tristans little head peeking in front of Alyssa's horse
Here is a homeschooling fact for everyone here, This lady told us that a rhino's horn is NOT made of bone. It is compressed hair!
Alyssa's favorite part was the fire breathing people. She watched them like 20 times and never tired of it! She was amazed. The kids keep telling me about it over and over.
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Jun. 12, 2008
Tristans hair.
Tristans hair is getting sooo thick now. Well thick for him! I LOVE IT! My mil tells me that sometimes chemo and the process of the hair going and coming causes it to change colors. I would LOVE it if it stayed this color. Tristan hair is like a caramel blond color!
Even when he was a newborn with his hair just growing in, it was always darker.
But look at the comparison, I should have taken it in the bathroom tonight when I wanted to, but I snapped a pic of him in bed with the night vision. I am going to get a pic of it all fluffy tomorrow. But this is tonight in the dark and summer of 2007. Look at the color difference.
He no longer looks bald. It just looks like he was blond and we shaved his head and it is growing back in. We do not get looks anymore at all. He is getting a nice tan on his head too so the sun could be lightening it. He usually wears a hat and LOTS of sunscreen but sometimes it comes off.
Tristan has clinic on Tuesday. Just vincristine in his mediport. No spinals. But pray for us because it has been a long time since we went last and I have this feeling it will not be pretty again.
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Jun. 6, 2008
oh wanted to share what a sweet friend of ours did
Our dear friends Suzanne and Philip (a.l.l. Leukemia) were doing their relay for life and they sent me these pictures.
I was very touched and thought it was such a sweet thing.
I also got a really sweet t-shirt in the mail from another online friend Tanya. I have to get a picture of Mr. Tristan wearing it to put up. It is a great T-shirt that says B>cancer (be greater than cancer).
I have the best friends!
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May. 20, 2008
YAWN! I am so ready for bed!
I am ready to crawl into bed. My leg is aching bad! With Tristans pregnancy and this one, my right leg just aches! From the hip down to my ankle! Oh the memories came rushing back of how long I ached with Tristans pregnancy! I think until I had him! Well round two! Heating pad here I come!
But I figured I owed you all to come on and thank you for prayers for Tristan. I know my good friends were praying as my mom called the prayer chains. THANK YOU!
Monday mom and I took the kids shopping. Tristan napped in the cart, HE ALWAYS falls asleep in the car on the short way to the store! And when he woke up was feeling fine. We got popcorn at target and headed to walmart. He was fine in walmart until I got him out of the cart. Then he decided he wanted held by my mom and was NOT going to let her put him down. We tried, he threw a fit and practically climbed her. Embarrassing! Mom held him longer and said she noticed he was feeling warm. So we got our bread and checked out.
I got home and found the thermometer and was getting a reading of 100.5. Ok... almost the magical 101 number that all leukemia families learn to dread. I called the nurse on call and told her that it was that high and also informed her of us being around a sick friend the other day. She told us if it was not 101 then just wait.
So I paced. I knew Justin would not be happy if I waited too long. So mom went home to let the dog out to pee and I decided to wake Justin. He only had 4 hours of sleep. He was not thrilled and of course super worried. He got the thermometer and I have NO CLUE what I do wrong! NO CLUE! HE got 101.8 on one side and 101.9 on the other. And when we did get to the ER his temps were confirmed as the true temps.
So off we go to childrens. Monday around 4ish. We were there in the ER until 10. We got home at 11. They took blood and are seeing if it grows bacteria. It has 24 hours to show nothing then we should be clear. 48 hours they let it test to see if it grows anything. He was given a STRONG antibiotic and told to come back to clinic for his appointment.
He got to come home accessed. That made him happy.
So we had a super nice day at clinic. Tristans temps are gone. Just as fast as they came yesterday, today they are gone. I thank you all for your prayers!
He went ahead with his normal treatment and is doing fine. A tad cranky but his temps are down and we are chugging along as normal.
I guess it was a 24 hour viral bug or something. No clue. But thanking God for keeping his hand on Tristan. It is really a scary thing when they spike the fever so fast and you are rushed to the ER.
Tristan got a super cool hat at clinic today. Although it should say "Cancer Fears my Savior!" But hey, he lives in us so this works too 
I am not sure if I will get him to wear it much. He put it on to show grandpa but that is about it. lol He prefers ball caps.
Now I am off to bed! Thank you all! I have the most amazing friends in the world! I appreciate it and I know it is your prayers that carry us through! Thank you!
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May. 17, 2008
A visit from our friend Joshua and a few other rambles
Our good friends Kevin and Joshua came over to visit tonight. Kevin's wife Amy was working. I swear Amy we love you too! It seems like the only time they get over here is when she is working! I do not want her to start wondering if we do not like her or something :)
Tristan was taking lots of pictures so I made him sit and snapped one of Joshua with him. Kevin was commenting on my blog and said he wanted to see Joshua on it! So with parents permission here are our handsome boys!
Tristan is 3 of course and Joshua is almost 2! Next month if I am correct. Boy he is growing so fast! The last time Alyssa played with him he was walking but favoring crawling. She was AMAZED that he was walking and talking! She kept coming in and telling me what he was saying and doing.
The kids played really good together. Of course to the dads delight... The two boys went upstairs (I carried him up Amy) and brought down the 2 pink barbie cars and the dump truck and monster truck lost out on what they wanted to play with!) oh my. hee hee
Anyways... So that was our evening. That and gutting a HUGE fish Kevin brought. I am going to KILL him in the morning when I wake with morning sickness and have to make the kids breakfast. I am going to love the smell of my fridge I am sure. Shuddering just thinking about that!
So Tuesday is clinic day again. Please say a prayer for Tristan. As you might notice in the picture, he is shirtless. Gaining more confidence every day... I have a sinking feeling Tuesday is NOT going to be pretty. A month off is nice for me but Tristan is a different story. It is harder on the kids. So prayers that we glide through it would be GREATLY appreciated.
Nothing exciting happening. Just blood draw and push chemo. No spinals this time.
I am anxious to hear if any of our meds change. I received a letter in the mail from the hospital saying that our study was suspended due to the Dexamethesone causing problems... and to not be surprised if things change. My mother in law (and me really) is thinking nothing will change since we are in maintenance and not on high amounts. But I would LOVE to hear that our amount is being cut back or gone all together. On one hand I would LOVE that. But on the other I want what is BEST. And if it is gone or cut back, I would worry about it not being the best. God knows. So of course we just pray and what he wants us to do, we pray happens.
Tristan has a head of fuzz now. It is so cute! Some lady asked Justin at the video store today if we shaved it with a razor. Um.... Justin said no, he had just finished a heavy chemo round for his leukemia. The lady was like "I do not know what to say to that" lol Justin takes things so to heart. I would have laughed or smiled. It really bothers him. That is ok. It is how he deals with it. To me, I LOVE when people ask about my special man. I do not mind telling people about him and I am PROUD of him. I love to tell them what a strong and mighty kid he is. I feel bad though because it seems like everyone asks Justin.
The other day a little girl came into the store and said "look mommy that kid is bald" Tristan turned to my mom and said "where Grandma?" hee hee. He has no clue! I mean he knows but he has no clue what bald is.
Justin started telling him he was going to mess up his hair and Tristan will take off running squealing no! It is funny.
Oh my, this got long. Sorry! It has been a while. I will not get so winded next time :)
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Apr. 22, 2008
WE MADE IT TO MAINTENANCE!
Big news today! We have started maintenance! Which is where we will call home until our leukemia journey is over. Wow... you know I cannot even imagine it being "over" I cannot wait for the day but it seems so unreal!
Today we went to clinic and they took Tristan's blood. They tested it and said his ANC was 1,300 which is our magic number that needs to be over 700 I think to start the round. Could be 900. Either way, 500 means no going in public. So that was good.
His hemoglobin was only 7 though and under 7.5 they transfuse. So we waited to hear if they were going to transfuse or not. They took more blood to test and type incase he needed a transfusion.
Turns out, upon testing it he was producing "baby blood" (what nurse Rose called it) so they did not transfuse expecting by tomorrow his hemoglobin to be way up fine.
So all that commotion and we went on to his spinal tap. They started cleaning him up and were ready to start and I realized - um... no one put any numbing cream on his back!  He had his loopy meds but... still. We decided to just go for it since that only numbs the skin and in one second they would be past that part... Poor baby! But he did fine. Yes he cried but I think it was because Rose was holding him more then pain. He is one TOUGH cookie! They did not drug him up really good this time because his hemoglobin was so low. So he was on a smaller dose then normal. It was not the best situation but Dr. Terri did a QUICK and awesome job and was done in no time flat
But Tristan was not as out of it as he should. He was actually COUNTING to 10 with us when we said 10 more seconds and you can get out from under Rose. (putting Methotrexate in his spine) Then they saw it took too long so we had to count again! lol Poor Tristan.
He had a melt down and wanted to sit up right away. I know it upset the dr and nurse but I ended up letting him. When he is not drugged up he does NOT want to stay laying flat. It is worse on him then a headache from the spinal would be.
So he did get up to eat and drink and calm down a little. It was just a bad day for him. He has caught our family cold and was up all night coughing so he was just moody.
When we went to leave the clinic he started to cry. WHY? No one knows. But anyways, he cried from clinic to Falk Pharmacy until about 20 mins later. He takes tantrums like this at home. How I deal with him is I put him in my room, shut the door and tell him I do not want to see him until he is finished with his cry and tantrum. We found spanking and corner only make him rage more. So we do not do that when he tantrums. But being in the middle of the hospital there is no where I could take him to calm down yk? So we were stuck. When we are not away from him he takes LONGER to get it all out. Sigh.
He did calm down and feel asleep in the car. Then we stopped for lunch and he cried again being woke up. But he then fell asleep on my legs in the booth.
So Maintenance... what does this mean? Well we are now down to monthly clinic visits for the remainder of the years. We will get Vincristine at clinic and every three months we have a spinal. He will have a daily chemo pill and every Tuesday we are Not at clinic he will have 6 extra chemo pills.
Pretty much the same deal we had before (between our intense treatments) but skipping the 6 pills on clinic day changed. Tristan handled it well last time and we expect him to again. Oh he will also have 5 days of steroids every month. Fun.   
Here is Tristan starting to get some loopy meds for his spinal... too bad the sun came in the shades on his head like that,
And here he is with his car using his Port tail as a gas hose to fill it up!
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Apr. 9, 2008
Well.... we came home accessed again!
Clinic yesterday went well. Tristan's counts are up good and everything went smooth. But we found out, we have one more week of visiting nurses and hard chemo. I thought we were done. The nurse practitioner forgot to tell us. The dr acted shocked that we did not know and asked if it would be a problem. Um no, I just was surprised.
Praying this week is as good as lasts. The dr said this week would probably wipe him out and do not be worried if he has to get a transfusion at the end of the week for something or other. They expect it in a lot of kids. But we are praying he does not. That things go just as good as last week.
___________________________
Morning sickness here I come! Blah. I am so asking for something for nausea this Thursday at my appointment. I guess it is good news though. Things are working in there huh?
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Apr. 8, 2008
I bet you thought I forgot about you!
Good morning! Today is clinic day again. (Good thing Tristan cannot read yet because he is on my lap as I type and would not like that news!)
Last week went AMAZINGLY (Divinely) well! Tristan flew through with ease! PRAISE GOD!!!!!!!!!! Thank you all for praying! Today is our last milestone to reach until we hit maintenance. We go today to get chemo then get two weeks off, And we are to maintenance!
Here is Tristan with one of his visiting nurses, Rene.
And here is a pic of Alyssa, she was singing and dancing for my mom! She was singing to and Alvin and the Chipmunk Cd.
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Apr. 1, 2008
Day 1 of our second half of intense treatment.
So far so good! Tristan woke up very upset to have me putting his cream on. It was so sad! He cried so hard. He would not take his amox. So he did end up missing todays morning dose. Mil said to just let it go because we had to go and there was going to be NO forcing it into him. It will work out ok because I really am looking like I am going to be one does short anyways. I got 4 more days today and if they gave me exact amounts... then I was one does short. Not sure what I do wrong. Anyways...
So we get to clinic and were early! We got there at 8 for our 8:30 appointment. So we wait. Get in and start treatments. He was very upset about the port access. But they do NOT hurt him. It is obvious by no reaction when the needle goes in. You can tell he does not feel it. But he cries anyways.
For his spinal he was a little goofy with his meds. Kept saying "Nunny, nunny" What he says for Mommy when he is being baby like. When I say "Say MOMMY" He can. Anyways... he was saying that and tensing up. They had to stop and give him a second to stretch and start again. He was stopping the flow with his muscles. But they ended up getting a good tap on him after that.
He had to drink and have IV fluids in him. The chemo he is getting this week is something we have never had before. And in order to get it, he has to be well hydrated. Which since he was not allowed food or water for the spinal... was tough.
Tristan had a MAJOR meltdown when I told him he had to drink his pop. (Caffeine to help him not get a spinal tap headache) He threw a crying fit. Not mean but sobbing upset. I think what was happening was the spinal tap meds were wearing off at the same time I was trying to get him to drink something.
Anyways... Nana came to the rescue with Cheesies And he ate them like a champ and then wanted to drink.
So with two bags of fluids, and 2 pops, Tristan was able to get his chemo.
He also had to pee in the bottles so they could check his pee to how diluted it was. To make sure he was hydrated. So they gave him these bottles that he LOVED playing with! (AND YES MOM THEY WERE CLEAN AND NEW! she cracks me up by asking that! Sure they would give him dirty ones!)
He was cracking us up, pretending he was an elephant. and putting cheezies in one, and more!
When we went to leave it was ADORABLE! Tristan was walking out holding his arm down straight and looking at himself and each of us like he was getting away with something. We did not tell him he was going home with it accessed. All the way to the parking garage we could see him eying up his mediport and then us. We sat down outside and he leans over to Nana and says "Hey Nana! They forgot to take my pinchy out!" I about died laughing! He was like - hey!!! look what I got away with! Or like the fish on the end of NEMO where they get to the Ocean in the bags and are like "now what" He finally got his wish. THey did not deaccess him but... now what? He had to take this thing home!?!?
He is doing well with it. He is guarding it but was in an AMAZING mood tonight! So far so good.
Zonked out on the way home
I think we have a long week ahead of us. The clinic told us to give him his Nausea Meds every 8 hours and do not let it go. Even if he is not sick give them to him to head off the Chemo sickies that he might have. We might get fever, vomiting, diarreha etc. We also have to get him to drink drink drink. That is going to be fun trying.
He is on a new Chemo pill at home for 14 days. It is harder then the other stuff. We will get home care for 3 days. And go back next Tuesday for another spinal and more chemo. Then we get two weeks off! And we hit MAINTENANCE!!! I cannot wait!
Maintenance will be once a month Chemo down at clinic (Vincristine) with 5 days steroid. Every day Chemo pills. Then the three weeks we are off clinic we will give him another chemo pill once a week. Then once every THREE months we get a spinal. And that is what it looks like for the next 3 years.
I am excited to get there! Keep praying! Thank you everyone! we cannot tell you enough how we appreciate your prayers and support!
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Mar. 25, 2008
Rambling updates
Well... it was supposed to be second wave of intense starting today. But that was postponed a week.
Sunday we had a nice scare day and ended up in the ER with Tristan. His temp. Spiked to 101.5 and we were very scared. The good news is Tristan was able to come home. He is on antibiotics for Pneumonia. Not sure if he has it or not because his Xrays were unclear but he is on meds anyways.
The clinic drs said that this week coming up was going to be the worst he would experiance. It is a week that a lot of kids end up in the hospital. The daily chemo wipes them out! And since we are low right now in numbers they want to see them get higher. Because if we start from a bad number we are pretty much starting the treatment at an unideal situation.
So we did not get treated today. That is ok. I want him to do well. And so we wait.
My father in law is in the hospital with pneumonia right now. The Dr. today admitted him. He has been sick a week. So prayers for him.
I forgot to call for my blood results in the scramble of todays activites. So I have to wait till tomorrow morning to get my beta numbers. Blah. Oh well.
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Mar. 23, 2008
Philip Update and Pics from Us!
Little Philip has ALL Leukemia Just like Tristan. We are very happy to hear that good news since ALL is the more common form and much higher cure rate. He also go the "all clear" for his spinal fluid. Which is great news. His port is in place and he was getting steroids. That is what his mom said. So their journey begins. I am so happy to hear things are going well. I will let you all know later if she starts a blog or something. For now they are at the beginning stages where she is in the hospital still in the confusion Whirl Wind. And soon Suzanne will have a newborn to take care of. So lots on her plate. Not sure how much computer time she will get. So keep Philip in your prayers when you pray for Tristan. I will have to ask her if we can put a picture up so you can think of his face when you pray. Not sure right now how they feel about his picture on public blogs.
And some pictures I was going to post yesterday....
My sweet kiddos the other morning watching TV
I told you he was back to being steroid boy!
My goof balls in the bath tub. That is a water droplet and shadow on Tristans chest.
Hair, Now you see it
And
Now you don't
Excuse the duh look, I took it in the dark room and his eyes were not happy with the flash!
And just for comparison... here he is on day one of Treatment on Feb 26th. So less then a month before.
He is a total different kid. I love him so much. But it really is like I have two different kids. He melts my heart.
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Mar. 21, 2008
My heart is breaking right now for a dear friend.
I had snapfish all uploaded. I am ready to post a big me post with Tristan and good fun stuff tonight. Then I logged on to my baby board where my dear friends post. Tristans group. And I got the devastating news that dear little Philip, Tristan's age, has leukemia. I knew it. This morning when he was being tested because his blood counts were low... his red and white. I had that thought and pushed it out of my mind. And I feel EXACTLY like when I got my news. I am shaking. I am crying. I know how alone Suzanne must feel.
My dear friend Suzanne and her husband John. Please pray for them. Suzanne was to have a C-section today. She rescheduled it for tomorrow. And now this. The most joyous time in her life... and she has this news. (just called her, she is now looking at monday or tuesday for her c-section)
Please pray for Philip! Suzanne and her dh are Christians. Wonderful people and I know they have great faith. I pray that I can be an encouragement and not overwelm her. I want to call her right now, if it was not so late. I doubt she is sleeping... And just surround her with love.
Please pray for them.
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Mar. 18, 2008
Happy Dance!
The Steroids are done! The Steroids are done! 21 days and they are done! Woohoo! I am sure we will see them lots more in maintenance but for now they are done!
Tristan sticking his tongue out at Alyssa taking his picture.... You know.... Tristan had his tongue snipped when he was little to correct being tongue tied... Now it comes a wee little bit but not much at all! lol So now he just has an Irwin short tongue.
My Pretty Alyssa.
And Bubby in the Bath. He hates baths when he is on steroids. I think it is adorable how he gets a cleft chin when he chubs up. It is not there when he is thin. lol
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Mar. 13, 2008
My little chunk-o-munk and run down of our day today.
Alyssa got Tristan up and playing today for a little bit. He was behind the couch playing and she ran upstairs to get something.
The weather got good so we went outside. Tristan played a little but then he pooped out.
And he said he was bored and wanted to go inside.
Then we took a walk. He rode in the stroller so it was nice.
It was a really nice day. We grilled out and MIL came over.
Then the kids got a bath before bed. I had to take a picture.
Check out his belly!
He is just too cute. Just a few more days of steroids. :)
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