Friday was Clinic Day down at the Hemo/Oncology Clinic at Children's Hospital. It was a longer day for Tristan and me because we also had an Echo Cardiogram scheduled to check out his irregular heartbeat.
(I want to write Murmer but just cannot figure out how that is spelled!)
I love that little boy so much. We got to see Whitney the Nurse Practitioner and she had done a Fundrazor for Cancer. I could NEVER pull of a shaved head and look so beautiful! But she does it awesome!
Tristan's counts were good. Everything looking exactly as they want to see em. Praise you Jesus!!!
And we should get the results of his Echo later I guess.
The kidlets are at their dad's for the weekend now. Chugging along.
I signed up for my fall classes at BC3. It was hard cause I wanted to sign up for fall after I started my summer load to see how I did with 6 credits. But since you have to sign up now I have no clue... so I just did another 6 credit load in the fall. Guess I will add another class in January if I think that is good.
It is kinda exciting to see more classes checked off my list. (even more exciting at they get finished!)
I also FINALLY got my name change papers! The lawyer said one week... 4 weeks later I got tired of watching the mail (I know mom said I should got tired sooner...) and called him. Guess what! It has been done and he accidentally filed it instead of mailing it to me! What a mess! So I have been in limbo with financial aid, college, car registrations etc not knowing what name to use. Not wanting to file things and then change a week later... sigh...
But that is moving along now.
Went to Marxville last night. Took my mom :-) Played cards. lol That was fun. I made mom go to the rails to trails with me first. She liked it half way... the way back is a gradual up hill.. she was not liking it then. she did 3.25 miles. Good job mom!!!
Alrighty then. those are my updates!
Showing posts with label Tristan's Journey. Show all posts
Showing posts with label Tristan's Journey. Show all posts
Saturday, April 28, 2012
Saturday, January 14, 2012
Updates on Tristan.
Well after three days I think Wyatt finally is on the mend. Last time I gave him tylenol was this morning and while he still was cranky and fell asleep on me for a nap today, I think we are on the mend. THANK YOU LORD! He wore me out! Very demanding sick boy. Heaven help his future wife!
Yesterday I braved the winter weather (Guess since I am a stickler for living in PA I just have to deal with it and not complain - lol) and took Tristan down to clinic. And I did not even arrive late! Go me! I have to say - I HATE antilock breaks though. I know they are safer and work, but the feeling I get when they kick in freaks me out! They make me insane! Three times yesterday.
So Tristan's clinic appointment went well. His blood did not want to give and we spent forever in the blood lab trying to squeeze blood outta his finger. And finally she just stuck him again. Poor kiddo has come a LONG way from the days of kicking and screaming. He was a fighter!
His counts were "beautiful" said his oncologist. Praise GOD!
I did have his heart murmer checked since his Primary Care Dr mentioned it twice. She said that she did hear it too and next visit in April she is going to do an Echo on him just because it will make me feel better. I think with our family having a genetic heart valve issue with my dad and his titanium one, it will just make me feel better. I also have read lots of articles on watching their hearts after chemo. Better safe then sorry IMO. So that is going to be scheduled for April 20th.
He also has bubbles on his knee. I wanted to pop them so bad cause they look like ingrown hairs to me. But he never would let me. So since they have not gone away I showed her. She said they were not ingrown hairs but a viral skin rash that is not FROM his leukemia but he is more prone to get since his immune system is weakened.
Funny I do not think of him as having a weakened immune system anymore since we always have good counts but she said it is most definitely weaker than normal kids. Typical kids? To be nicer about saying it. So good thing I did not pick it and don't. It is driving me nutso. I said if it was on me, I would so have picked. lol
So that is our updates. We have gotten now to where we can wait every three-four months now between visits. Which is AWESOME!!!!!!!!!! She said no need for counts unless something comes up of concern. And when he hits the three year mark we will go down to twice a year. But for now we will stay on every 3-4 months until then. I think we have two years to go. Well we do. It was a year off on December 31st.
I still cannot believe all we have gone through and how far we have come. It is amazing the things we have went through and it all seems like a memory. I want to encourage other parents going through it - that I PROMISE it will be normal again someday. You feel like your world is upside down and you are never going to get out for air. But the day will come. And you will be amazed at what you made it through. What they made it through. I am so blessed.
While I am thinking of it, I need to go in search of my little pal Philip and updates on how he is doing. I have not seen Suzanne around in forever.
Yesterday I braved the winter weather (Guess since I am a stickler for living in PA I just have to deal with it and not complain - lol) and took Tristan down to clinic. And I did not even arrive late! Go me! I have to say - I HATE antilock breaks though. I know they are safer and work, but the feeling I get when they kick in freaks me out! They make me insane! Three times yesterday.
So Tristan's clinic appointment went well. His blood did not want to give and we spent forever in the blood lab trying to squeeze blood outta his finger. And finally she just stuck him again. Poor kiddo has come a LONG way from the days of kicking and screaming. He was a fighter!
His counts were "beautiful" said his oncologist. Praise GOD!
I did have his heart murmer checked since his Primary Care Dr mentioned it twice. She said that she did hear it too and next visit in April she is going to do an Echo on him just because it will make me feel better. I think with our family having a genetic heart valve issue with my dad and his titanium one, it will just make me feel better. I also have read lots of articles on watching their hearts after chemo. Better safe then sorry IMO. So that is going to be scheduled for April 20th.
He also has bubbles on his knee. I wanted to pop them so bad cause they look like ingrown hairs to me. But he never would let me. So since they have not gone away I showed her. She said they were not ingrown hairs but a viral skin rash that is not FROM his leukemia but he is more prone to get since his immune system is weakened.
Funny I do not think of him as having a weakened immune system anymore since we always have good counts but she said it is most definitely weaker than normal kids. Typical kids? To be nicer about saying it. So good thing I did not pick it and don't. It is driving me nutso. I said if it was on me, I would so have picked. lol
So that is our updates. We have gotten now to where we can wait every three-four months now between visits. Which is AWESOME!!!!!!!!!! She said no need for counts unless something comes up of concern. And when he hits the three year mark we will go down to twice a year. But for now we will stay on every 3-4 months until then. I think we have two years to go. Well we do. It was a year off on December 31st.
I still cannot believe all we have gone through and how far we have come. It is amazing the things we have went through and it all seems like a memory. I want to encourage other parents going through it - that I PROMISE it will be normal again someday. You feel like your world is upside down and you are never going to get out for air. But the day will come. And you will be amazed at what you made it through. What they made it through. I am so blessed.
While I am thinking of it, I need to go in search of my little pal Philip and updates on how he is doing. I have not seen Suzanne around in forever.
Thursday, December 8, 2011
Silly String, Soup, Strep and Serious Poppin.
Ok, so after many weeks of Tristan asking for Silly String, I gave in. But not until after I called my friend to make sure it was not going to be awful! I have never touched the stuff before and had no clue if it would stick to everything and be a pain in the butt to clean up. Well it wasn't. It was pretty fun. But since I still - even after asking - felt unsure about it inside the house, we played on our trees. Wyatt says we decorated Christmas Trees! Yep, kinda. lol It was fun. Probably will get it again. :)
Speaking of again - about two months ago I facebooked about the foam hair dye. How I could not STAND how much my head was poppin and I wanted to go insane with it! Swore that it better be the best hair dye ever or I was not going to use foam again! ... well I have to say - I think it was worth it. I did not have that feeling of I NEED to dye it again! It faded but not near as fast as Feria. Still love my Feria but had to move on. ... (still have a box in my cupboard for old times sake - been using Feria for 13 years!!!) Anyways... I think the 30 mins of head popping insanity is worth it. Just wanted to update you all. I know you care!
Kids were very well behaved this week when I went shopping. We even hit two stores. I have to brag because - hey I am proud. I was in the dollar store. We love to go in with a list and the kids Christmas shop for everyone. It is super sweet to see what they choose for everyone. We were there a while and at the check out had a bunch of items. The older two entertained Wyatt while I checked out. The cashier commented how well behaved they were (HA! This is a miracle!) and how nice it was how they were so loving with Wyatt. It is true. I am very blessed at how well my older two act with Wyatt. They are such great siblings. But it is nice to have someone notice and comment.
Poor Tristan got Strep throat this week... He was up all night (and making sure I knew) just miserable! We won a trip to Dr. Trotta's. I can always tell strep, we get it so many times. I was 99.9% sure he had it. And of course - positive. Here he is asleep on the drs table!
Today is cold!!! And I am in a soup mood. So I have my crock pot simmering for ham and bean soup. Here is a pretty picture. I LOVE SOUP!!! At the end I will add corn starch and milk and make it all creamy goodness. (boy I talk about food alot on my blog) You should smell my house! DELISH!
Friday, November 11, 2011
Ramblings on Clinic, Headsprout and Homeschool
Great day today! Tristan had clinic - we went down to Children's Hospital and I really enjoyed the oncologist taking time to discuss a lot of stuff with us. We talked about everything from Tristan's immune system always seeming to be down (every visit we are checking his lymph nodes because they are swollen with a virus) and how he seems to always have something - to Tristan's height being off the charts! lol This kid is going to be huge! He has followed at 97% curve since he was a baby and is still going strong on pushing above the 97th! It is not from steroids, it is just who he is.
We also discussed how it takes a while for the vincristine and dexamethosone to get completely out of his system and that is why I am slowly seeing him gain back stamina etc. We discussed starting him back on getting his immunizations. Tristan has not had any since he was 2 and a half. So shots here we come!
Just a nice visit. His counts were good. Go back in January. He is coming up on his one year mark of being off treatment. This is exciting! Dec. 31st were his last meds.
A nice day of homeschool for Tristan too. We got to clinic an hour early by accident - my mind was thinking his appointment was at 10... but it was 10:30 and I gave us extra driving time because of the snow... never know how drivers will act in one of the first snow drives of the year. So we visited the gift shop and got a building set. It is plastic with screws and nuts and makes 10 different projects. We worked on that waiting.
I got home and was cleaning out bookmarks on my computer and came acrossed Headsprout again. Last year Tristan was working on www.headsprout.com. I finally quit because it was AWESOME but it rushed him through faster than he was really learning. He was guessing most of the lessons and I felt it was not benefiting him.
Well it has been 8 months since we stopped... so I thought - hmmmmm wonder how he would do now... It was GREAT!!!! He picked it back up on lesson 40 and completed it perfect! But not without thinking - it was still a challenge. I think the break was EXACTLY what Tristan needed.
Very excited to start back on the second half of the program and see how he does.
So they are going to their dads tonight. I have quite a few things to do this weekend. I am volunteering at Harvest Community Church's Thanksgiving outreach. It is a free to the community complete Thanksgiving meal. A big heated tent in the walmart parking lot of Kittanning, PA if anyone in the area wants to go! The meal will be served tomorrow (Saturday) from 3-5. Then they will serve one in Petrolia, PA for our PVC campus Sunday afternoon with the Steeler game projected on their big screen.
I hope to get in a nice run tomorrow and want to work on organizing homeschool for next week. Very excited to add Headsprout into the mix. I also have to go back and work with Alyssa on multiplying. She is doing a computer program - Teaching Textbooks and sometimes you don't always notice their mistakes if their answers are right. I happened to be watching her yesterday and noticed instead of actually multiplying 8 x 4 she was adding 8+8+8+8. Getting the right answers so I had no clue she was not really multiplying. So stopping her lessons to work on that next week.
I LOVE HOMESCHOOL! I love the freedom to STOPPPPPP dead in our tracks and work through the bugs. What is not clicking - we can halt the lessons and not move on until it works. That is the beauty of it all. I remember the same issue on her addition facts. She just did not get them. We took a month off her lessons to work on them. Not moving on until the student gets it is KEY to a good education. Especially in reading and math.
Well I rambled enough - here are 4 new pics from my phone. Nothing exciting. Alyssa at Gymnastics - LOVING her new class - very challenging and more in depth than the other classes. Then a sweet picture of Tristan and Wyatt snuggling watching a movie. I LOVE MY KIDDOS! And then Just me. :) Thank you Jesus for where I am today. (by the way - yesterday was my 10 year anniversary - assuming you all know I am in the process of separation/divorce...funny I never thought life would be like it is ten years ago. Thank you God for your hand on my life. My future is in YOUR hands!)
We also discussed how it takes a while for the vincristine and dexamethosone to get completely out of his system and that is why I am slowly seeing him gain back stamina etc. We discussed starting him back on getting his immunizations. Tristan has not had any since he was 2 and a half. So shots here we come!
Just a nice visit. His counts were good. Go back in January. He is coming up on his one year mark of being off treatment. This is exciting! Dec. 31st were his last meds.
A nice day of homeschool for Tristan too. We got to clinic an hour early by accident - my mind was thinking his appointment was at 10... but it was 10:30 and I gave us extra driving time because of the snow... never know how drivers will act in one of the first snow drives of the year. So we visited the gift shop and got a building set. It is plastic with screws and nuts and makes 10 different projects. We worked on that waiting.
I got home and was cleaning out bookmarks on my computer and came acrossed Headsprout again. Last year Tristan was working on www.headsprout.com. I finally quit because it was AWESOME but it rushed him through faster than he was really learning. He was guessing most of the lessons and I felt it was not benefiting him.
Well it has been 8 months since we stopped... so I thought - hmmmmm wonder how he would do now... It was GREAT!!!! He picked it back up on lesson 40 and completed it perfect! But not without thinking - it was still a challenge. I think the break was EXACTLY what Tristan needed.
Very excited to start back on the second half of the program and see how he does.
So they are going to their dads tonight. I have quite a few things to do this weekend. I am volunteering at Harvest Community Church's Thanksgiving outreach. It is a free to the community complete Thanksgiving meal. A big heated tent in the walmart parking lot of Kittanning, PA if anyone in the area wants to go! The meal will be served tomorrow (Saturday) from 3-5. Then they will serve one in Petrolia, PA for our PVC campus Sunday afternoon with the Steeler game projected on their big screen.
I hope to get in a nice run tomorrow and want to work on organizing homeschool for next week. Very excited to add Headsprout into the mix. I also have to go back and work with Alyssa on multiplying. She is doing a computer program - Teaching Textbooks and sometimes you don't always notice their mistakes if their answers are right. I happened to be watching her yesterday and noticed instead of actually multiplying 8 x 4 she was adding 8+8+8+8. Getting the right answers so I had no clue she was not really multiplying. So stopping her lessons to work on that next week.
I LOVE HOMESCHOOL! I love the freedom to STOPPPPPP dead in our tracks and work through the bugs. What is not clicking - we can halt the lessons and not move on until it works. That is the beauty of it all. I remember the same issue on her addition facts. She just did not get them. We took a month off her lessons to work on them. Not moving on until the student gets it is KEY to a good education. Especially in reading and math.
Well I rambled enough - here are 4 new pics from my phone. Nothing exciting. Alyssa at Gymnastics - LOVING her new class - very challenging and more in depth than the other classes. Then a sweet picture of Tristan and Wyatt snuggling watching a movie. I LOVE MY KIDDOS! And then Just me. :) Thank you Jesus for where I am today. (by the way - yesterday was my 10 year anniversary - assuming you all know I am in the process of separation/divorce...funny I never thought life would be like it is ten years ago. Thank you God for your hand on my life. My future is in YOUR hands!)
Saturday, June 11, 2011
Summer off...
Last night I completely cleaned out my homeschool cupboard and rearranged it for this coming school year. This is my favorite time of the year. Prepping for next. Alyssa sat with me and said - mom... I know you wont hear many kids say this - but I miss school! Do you think once it is ready I could do a little here and there when I am in the mood? I said - sure hon. And she talked with me about what she loves about homeschool.
I was kinda getting in a slump that all homeschoolers go through - wondering if it would be good to just put them in school. I think it is ok to question and re-evaluate your decision every so often. I always come back to YES I am doing the right thing.
But being in the slump I was - it was wonderful to have a heart to heart with Alyssa and hear all the good I am doing with her.
I think I am struggling with my decision because I am at the hard point with Tristan. Teaching him to read. We are so almost there... but the wall is up. he can read words that I put on paper. But a story he doesn't. I remember the worry and frustration with Alyssa. I shed a few tears for her. And then one day - BAM it happened. The wall crumbled down and the reading happened.
I know that one of these days that is going to happen with Tristan too. And when it does - it opens up so much more into our homeschool experience. Alyssa picks up books and just starts reading. This one book I was saving because I was not ready to go into it with her yet... well she found it and could not put it down last night. It was on the subject of abortion and life before birth. Tough stuff! I was going to go for that one when she was around 12. But she got it and was loving it. I guess I should have trusted good ol Answers in Genesis to make a childrens book fine for tough subjects.
So I am getting ready. And excited for the new year. Now is all the fun of getting in my paperwork and afidavits to school. (however you spell that) July is our casual month. When we are bored we start school. So I want to get my paperwork in asap!
Here are a few pictures of what I have been up to since blogging last.
We moved into a town house in Butler. My half is the one with the fan in the window. I thought this was awesome!
Skate castle Roller Skating with the kids.
McConnells Mill
Tristan is now on to finger sticks and this is Rose his awesome nurse. She is happy to not be kicked and fought for mediport access. She happily sat beside him and let the other nurse stick his finger! ha ha. We love Rose!
Girls Night Out! Woo hoo! While I miss my babies DEARLY when they are with their dad every other weekend. I could do one of two things - sit around and cry or go out and enjoy my friends. I picked that one! Celebrated 2 birthdays last weekend and had a super nice Olive Garden Dinner. The girls - minus LeAnn who took the picture. I LOVE MY FRIENDS!
And while I was out - my sister in law smart enough not to be Megan - sent me these pictures on the cell phone. The kids dad took them to crooked creek. Megan was there too so I got to see my babies having a nice time. I am glad they did.
I was kinda getting in a slump that all homeschoolers go through - wondering if it would be good to just put them in school. I think it is ok to question and re-evaluate your decision every so often. I always come back to YES I am doing the right thing.
But being in the slump I was - it was wonderful to have a heart to heart with Alyssa and hear all the good I am doing with her.
I think I am struggling with my decision because I am at the hard point with Tristan. Teaching him to read. We are so almost there... but the wall is up. he can read words that I put on paper. But a story he doesn't. I remember the worry and frustration with Alyssa. I shed a few tears for her. And then one day - BAM it happened. The wall crumbled down and the reading happened.
I know that one of these days that is going to happen with Tristan too. And when it does - it opens up so much more into our homeschool experience. Alyssa picks up books and just starts reading. This one book I was saving because I was not ready to go into it with her yet... well she found it and could not put it down last night. It was on the subject of abortion and life before birth. Tough stuff! I was going to go for that one when she was around 12. But she got it and was loving it. I guess I should have trusted good ol Answers in Genesis to make a childrens book fine for tough subjects.
So I am getting ready. And excited for the new year. Now is all the fun of getting in my paperwork and afidavits to school. (however you spell that) July is our casual month. When we are bored we start school. So I want to get my paperwork in asap!
Here are a few pictures of what I have been up to since blogging last.
We moved into a town house in Butler. My half is the one with the fan in the window. I thought this was awesome!
Tuesday, March 8, 2011
Tristan's Pokemon Birthday Party
It has taken me a while to blog about my Tristan's 6th Birthday party because life has been in a whirlwind of craziness lately.
But here is my post! I had to pinch some pennies this year so we did most of the decorating and Pokemon things ourselves.
We worked on drawing a big poster board for decorations.
But here is my post! I had to pinch some pennies this year so we did most of the decorating and Pokemon things ourselves.
We worked on drawing a big poster board for decorations.
We made a Pokemon ball pinyata.
We did pin the tail on Pikachu
I made cookies and cupcakes and cake.
Friday, December 10, 2010
A New Season in Life
We have gone through many season in our life and are about to step into our next. October of 2007 our son Tristan was diagnosed with A.L.L. Leukemia. He was 2 and a half years old. Today we completed his final treatment. Certificate in one hand, Stuffed Lion in his other, my 5 and a half year old is walking into his next season of life.
Countless Procedures, Blood draws, Spinal Taps, Bone Marrow Tests, Many Many Many Pills, we are finally ready to close this chapter.
I remember back in the beginning, Tristan was the little guy who made tents out of his hospital tray and blankets getting his leg hug (blood pressure) and temperature taken hidden away with his Spiderman and dinosaurs. How I cried as I tried over and over to get his to take his pills only to have him spit them on me refusing to swallow any of it. Just wait they said - one day he will be like a pro. ha! I laughed. Well they were right, as I fill cups of 11 pills and he runs off with me calling "you have to drink more with those!" behind him. It amazes me.
Oh but Tristan did not "get better" for one thing, accessing his mediport. They said that would get easier with age. Well he proved us all wrong as he got bigger and stronger and it only meant he could fight harder. Well fight hard he did. He is a fighter. I love that boy so much.
So where are we at now... well all his procedures are finished up. He will continue to take his meds. at home until December 31, 2010.... then stop. And only take his antibiotic 3 times a week. He will have 3 months of check ups and in March we will schedule his operation to get his mediport out. It seems so unreal.
Then on to finger stick check ups for pretty much ever - but that is ok. We gladly get blood checks to keep an eye on him. Thank you God for all the technology that we have these days to keep our kids safe.
Countless Procedures, Blood draws, Spinal Taps, Bone Marrow Tests, Many Many Many Pills, we are finally ready to close this chapter.
Oh but Tristan did not "get better" for one thing, accessing his mediport. They said that would get easier with age. Well he proved us all wrong as he got bigger and stronger and it only meant he could fight harder. Well fight hard he did. He is a fighter. I love that boy so much.
So where are we at now... well all his procedures are finished up. He will continue to take his meds. at home until December 31, 2010.... then stop. And only take his antibiotic 3 times a week. He will have 3 months of check ups and in March we will schedule his operation to get his mediport out. It seems so unreal.
Then on to finger stick check ups for pretty much ever - but that is ok. We gladly get blood checks to keep an eye on him. Thank you God for all the technology that we have these days to keep our kids safe.
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