Friends and Chain letters

March 29th

Today Tristan was pretty wiped out after having friends over. He woke up and wanted to take a bath. I sent the friends home and he spent most of the day sleeping and watching movies.
I must mention that Tristan has not had the back pain since Tuesday. I am calling it a heavenly miracle! He is not even taking the pain medication any longer. I am so thankful for the power of prayer and continue to ask for them. We will take all of the Heavenly miracles we can get. We are so blessed to have so many family and friends that care and pray for our family and Tristan. <3 <3 <3

It was a pretty busy day as far as visitors and people coming and going.
We have been so lucky to have had several dinners brought in by the ward. Tonight we had a very yummy homemade dinner. Thank you to those of you that have contributed. It truly is nice to have one less thing to worry about preparing. I am so thankful for all of the food.
Although Tristan has lost 10 pounds, I think that I have gained about that. : )

I had two of my best friends visit tonight as well. Monica brought in some frozen dinners that she and a friend had put together. It was nice to be able to visit with her and her little ones for a while.













Amy was my friend that made Tristan's countdown chain, and what a hit it has been! Tristan loves taking off a link each day and it has been very uplifting reading the notes. THANK YOU to all that sent her e-mails and participated.





Amy and her hubby Jeremiah hung the chain in Tristan's room, not only was it super cute but it brightened the room and cheered it up a whole bunch too.

Georgia was
 a BIG help!

 

Thank you Amy (Jeremiah & Jackson) for your thoughtfulness and time. We love it and we love you!!!

Homeward Bound

March 28th

Tristan woke up feeling great! He had a lot of energy looked good and was joking with me.

Dr. Holly Spraker came in and told us that he could go home today. His heart rate went down, and the MRI looked good. YAY! he was very happy about this. The dietitian came in to go over the feeding tube, calorie intake, appetite inducing medicine that should help him to eat on his own.

Tristan was still not happy about this feeding tube but he was dealing with it. I packed our bags, took them to the car, picked up his prescriptions from the Pharmacy, came back and waited for discharge.

Amazing what a couple of pints of blood can do! I'm glad they gave him the transfusion before we left. Dr. Spraker (oncologist) said that he may be one of those kids that needs a transfusion after each round of Chemo. No this is not a "bad" picture.--------------------->
Tristan was giggling and trying to be scary! I love that his personality is back!

<-----------------------THIS! is a Bad picture! So we made it home safely, after no shower for 2 days I was very excited for a Hot Bubble bath. I got Tristan situated started the bath water lie down on my bed for 2 minutes and as I got up to turn the water off, our Bulldog Georgia was jumping onto the bed. Her enormous head slammed right into my face! Can you believe it? I had to call Chris to come back home, while I went to Riverton Hospital ER to get stitched up. My sister came to check in on my boys while I was at the hospital and the good news is that Tristan asked for an Oreo shake! He wanted to eat, I guess that is worth a few stitches?!

Tanner and Tristan had a small friend get together and sleepover tonight, it was fun they all enjoyed it and it was nice that it felt pretty normal around here.

Oh, and Yes I got that hot bath...just a little later than I had planned.

Hard Times

Monday March 26

Chemo went well but during the night Tristan's heart rate was extremely elevated, which concerned the Nurse. They Gave him fluid through his port and watched the heart rate throughout the night. no sleep for me as I was also watching this heart rate that ranged between 140-160 all night. Overall he felt fine and slept well other than being woken to use the bathroom and take vitals.

Tuesday March 27

Today started out with Dr. Randall visiting us at around 8:00am. He proceeded to tell me that he did not like the pain problem Tristan was having in his back. As he put it Kids do not just have this type of pain for no reason in their back. he said that bone scans are good but cannot 100% eliminate the possibility of another tumor in his back and that he would like to have an MRI of his back done today.
This already completely freaked me out and to top it off  Dr. Randall gave me his cell phone #! Why on earth would I need that? Unless something serious were going on.
I pushed the tumor thoughts to the back of my mind and begged everyone that I knew for Prayers and especially specific prayers that there were no tumor! He was scheduled for the MRI at 5:00pm. My Grandpa Morgan and a family friend came up to the Hospital to administer a blessing to Tristan.
Tristan was due for his Chemo treatment at 12:00pm which they began on time. Again the Chemo went well. He was not sick but he was feeling very tired again today.
I was told by the Nurse that due to Tristan's elevated heart rate we would not be going home today. They were also ordering blood and planning to do a blood transfusion this evening. The blood transfusion should help him feel better and also help with the heart rate.
This was one of the hardest days at the hospital. Tanner is off track at school and wanted to spend the Day with Tristan so Chris brought him up to the hospital late morning. I think that this was quite the eye opener for Tanner. He had a "Day in the life of Tristan experience" and it was a hard day.
For one, Tristan was hooked up to several medical devices and had to use the bathroom every two hours.

Plan;
Finish Chemo, Place feeding tube, MRI, Blood Transfusion.

I think the hardest thing for the three of us though was placing Tristan's feeding tube. He has not been able to eat and lost nearly 10 pounds.
They decided a feeding tube would be the best option to help him gain weight. With hopes that he would eat on his own in the near future.

This was not something Tristan wanted! He was so stressed about it that he asked to be put to sleep while they placed it. He could not calm down enough for them to put the tube in so they had 3 nurses hold him down while he screamed and Tanner and I cried (sobbed). It was difficult for Tanner to witness. Tristan was still upset after the placement. He did not like anything about it and especially the way that it looked. The nurse was telling him what a good job he did and he said to her " just get out of here".

Not only did he not get a break after that but he was due for the MRI, another thing that he hated. One good thing is that he was so exhausted from the fight of placing the feeding tube that he did not fight going into the MRI.
The Tech running the MRI was really cute with Tanner explaining why and how it worked and even letting him help with some of the scans and talking to Tristan on the Intercom.
Chris had arrived just as Tristan was going in so Tanner Chris and I went down to the rainbow cafe to eat and wait for the results of this MRI.

One hour later Chris went to the radiology dept to pick up Tristan and ask what the results were. We are getting good at asking for things "NOW".
The Doctor told him that the MRI would still need a complete evaluation but that he could see nothing abnormal on the scan! YES!!!! Thank you thank you thank you for those prayers. this is the best news ever!
We returned to the room watched The movie Puss in boots Together and Tanner and Chris headed home.

Tristan began his first blood transfusion at 9:00pm. It was weird watching the blood just flow into the little man. Especially after such a long eventful exhausting but happy in the end day!
PHEW.....glad this day is over!

Adjusting!

I want to begin this blog by saying something that I cannot say enough of these days. THANK YOU! 

We are so very blessed with amazing people in our lives. I cannot ever repay you all for the things that you have done and continue to do to help us out during this devastating time in our lives.

I wish that I could thank each of you individually because you deserve it. Please just know that none of it goes unnoticed we are so appreciative of the Love, prayers, kind deeds, service, thoughts, comments and concerns.

I know that I have not been able to respond to many of the comments, texts, and calls. Each is recognized and appreciated. Please don't give up on us. We are trying to adjust to this new life and get comfortable with the attention it brings. THANK YOU! ~ 

          P.S. please scroll to the bottom of this post and see how to participate in the countdown chain!

Just look at this group of family and friends that couldn't wait to shave off all their hair to support Tristan.

The Bold, The Bald, The Brave and The Beautiful! My heart is so full that I don't have the words to express the gratitude I feel. 

Kevin Buman "The change of season and the haircut are dedicated to Tristan Chidester!!! You're doing great Tristan. Go PADRES!!! "

This week has been another roller coaster. Tristan was able to come Home Monday afternoon after his sodium stabilized. Unfortunately the RSV, Pneumonia and SIADH (low sodium) took a toll on his body and his Blood counts were not high enough to continue with the 5 day inpatient Chemo that was scheduled to begin Tuesday. Bittersweet because it would postpone treatment but give him the "break" that he needed. At Home we continued with the IV TPN (vitamins and minerals) through his portacath for 18hours per day, because he was not able to eat due to severe mouth sores caused by the first Chemo. He also had IV antibiotics that I administered through the port every 8 hours. He has several other medications tat he takes to make things more comfortable that are typically on a 4-6hr schedule. This made it a little hard to rest, besides the fact that I am OCD about taking his temperature now. 

These few days at home made me feel like we had a newborn in the house again. It consisted of him sleeping, waking up screaming with pain in his back, me waking him to change his TPN giving meds and helping him to the bathroom. He was also very emotional, crying randomly and asking why things couldn't be normal again. This poor kid was exhausted in every way Physically emotionally and mentally!

Thursday Home health came to draw blood for the Counts.  James our Nurse called to let me know that Tristan's counts were higher than expected and we could start Chemo the following morning on Friday. 

Again, bittersweet. Friday Tristan and I checked into the ICS at 10:00. He immediately had very bad back pain and began to cry and roll around the bed in discomfort. I talked with the Doctor about this chronic pain he had been having and we discussed the possible causes. They gave him morphine, and decided that they needed to take him downstairs for an X-ray on his back. The X-ray showed the spine as normal and no bowel obstruction. They called Dr. Randall (Orthopedic Surgeon) to see if he would like an MRI to check for anything else suspicious. He is out of town right now so we will see him on Monday. (Yes we continue to play that waiting game) I am learning many things, including patience, how to keep a medicine schedule, Doctor and Nurse Lingo, how to read his body language also how to do all of these things with NO sleep. 

Friday Night Chris Stayed the night. We arrived at the hospital at 10:00am and they did not start the Chemo meds until 8:00pm. Chris said this was the easiest night since this all started. 

This round of Chemo is a little easier on his body and has less nasty side effects. (No mouth sores)

This Chemo has 2 medicines and he still has to go to the bathroom every two hours but he is walking on his foot now so he needs less assistance. He did not get nausea (Until today) and was able to sleep well with the pain medication and they gave him some Melatonin. 

Saturday, very tired still catching up on all his sleep now that he can actually really rest. I stayed Saturday night and it was very easy considering the "Newborn" schedule we had at home. It is nice in the hospital because I don't have to give all the medicines and set the alarm for every few hours. 

Saturday we had a Physical therapist come in to examine his back. He was so tired he did not want to get up. She was asking him to do all kinds of things such as "lift your leg, Touch your toes etc.." 

She kept asking him if that hurt his back. Finally Tristan just said to her "Can you just leave me alone, would you just go away"! -Oh my heck. I was embarrassed but could you blame him? He has been through so much! I just sat down and laughed a little while she continued to make him do things. 

Saturdays Chemo went smoothly too. No nausea, up every two hrs to use bathroom, back to sleep. 

Sunday the nausea came. He did throw up some and felt better after. It did not last long and he was feeling well enough after to eat a small amount of Chicken noodle soup. He was up a little more today but towards the evening really tired again. They started Chemo at 4:00 Today and so far so good! 

I am hoping that this round will be easier and he will be able to feel more like himself when we go home on Wednesday. His spirits are not as high. He is so weak and hardly smiles. He just does not act like Tristan. That being said. My dear friend Amy is making a countdown chain for him. Please participate! I think he will love to read these things...

Here is Amy's request 

Hello to Tiff's friends & family - I NEED YOUR HELP

I am working on a Cancer Count Down for Tristan. Tiff has expressed that he is getting a bit blue wanting life to just be normal again. Tiff and I thought a giant (315 days to go) paper chain counting down the end of treatment hanging in his room would help Tristan realize that there is an end in site. But we need your help...we would like to add a loving, supportive or encouraging note from all of his biggest fans, YOU, so that as Tristan counts away cancer he is reading loving and positive words from those cheering him on.

Please email your note to me (on Facebook or at aursenbach@yahoo.com) as soon as possible so that we can have our cancer count down chain hanging in his room as soon as this round of chemo is finished.

Thank you, thank you, thank you!

Special Visitors

Yesterday we had a visit from so pretty amazing people. Hero's in my book. Shortly after Tristan was diagnosed with Ewings I had several of my friends message me or text me about a boy that does not live far from us Tim Wright that had Ewings also. He is in Remission now (I can't wait to say that about us), but as I read their blog I found that we had a lot in common with the Wright family.

I did not want to talk much about Tristan's cancer or ask questions or answer them at first, so I did not contact the Wrights (right away). 

As the days went on and things got crazier and harder. I could not sleep, I worried about fevers all the time, and they kept happening. Finally one afternoon sitting in the hospital I searched for Amanda Wright on Facebook and messaged her. I did not know what I wanted to say or why I was contacting her other than I could not stop thinking about their family. 

I said something like, I have a few friends that sent me your way I read you blog and I have a son that was diagnosed with Ewings. 

Shortly after, I received a reply. She wrote that numerous people had contacted her about Tristan and she was patiently waiting for me to be ready to contact her.
I cried, it felt so good to have somebody that  knew the emotions and trials we were facing first hand and truly understood. I did not reply right away, for a few reasons but I really wanted to meet them and Tim himself. 

Yesterday they came to our door with a large bag full of goodies to make Tristans hospital stays a little more 'bearable". Wow, this family is amazing! Tim had picked out the items himself for Tristan it was a very personal gift and we appreciate it more than you know. He was able to go upstairs and chat with Tristan while Chris I  talked with his parents Cory and Amanda. It felt good to talk about it and not feel like it was a foreign language. I am so happy that I have someone that I can call in those emergenct=y moments that has been there! Already love them! 

They are all my hero's! Thank you friends for helping me to find them.  Thank you to The Wrights for taking the time to visit with us and comfort us! Thank you Tim for fighting hard and strong and winning, I know Tristan already looks up to you. 

Home at last.

Well we were able to come home today. The good news is that Tristan is feeling and acting much better. Bad news is that his ANC count was too low to do the Chemo as scheduled tomorrow, this also means no visitors. : (
After having a very long couple of weeks mostly in the hospital, I think we will consider this a break.
So, I am figuring out that Tristan truly is a one of a kind Rare boy. First of all Ewings Cancer is very Rare. It is diagnosed in only about 300 PEOPLE per year in the United States. Secondly the location of the tumor is very odd for this Cancer, his is in his heel, most often Ewings occurs in long bones such as the arm or leg.
Next RSV & Pneumonia after his first Chemo treatment "nearly never happens"?? Then last of my observations Low Sodium SIADH also a very uncommon not typical occurrence! I keep hearing the words "this does not normally happen", or "this is not typical".
This boy has had them all. I have now come to fear the odds and statistics that the Doctors give to me. When they say this only happens in about 10% of cases ~I am afraid!
We are going to defy all the odds anyway so bring it on! Right?

We are so happy to all be home as a family and we just hope it will stay that way until Thursday.

Wednesday they will draw blood again to see if he is well enough to start Chemo on Thursday for the 5  day treatment.
Tristan is walking around on his foot almost like normal, he has gone upstairs and downstairs with no problems. He is amazing and really loves being home especially being with his brother. He is very emotional and cried when he saw his Grandparents (it had been way too long).
Goodnight, I am off to enjoy having us all together again! : )

It's Official

 

                                                                                           














Today

                                         The last time he was bald : )

                   

RSV/pneumonia

                                                March 10th

 

Tristan has a fever again today. We were not even home 24hrs when I called the Hospital and they said bring him in just to be safe got back up at Primary Childrens and found out the nose swab test taken yesterday came back positive for RSV. They also took a Chest x-ray and confirmed pneumonia.

 

 

                                                   March 11th

 

                                         Poor sick little man!!  :(

 As a mom I am about to break. I don't know if I can watch this little boy go through much more in a 2 week period of time as well! He has ways been such a healthy child, this is so so difficult to experience!
Chris is staying for his first overnighter with him. I came home to rest with Tanner. I finally feel like Tristan will be ok. I need some rest too.

 

Tonight we have the "isolation" room again at least we have a view (can almost see home) & Tristan seems to be improving. : )

 

We will be here for sure another night and his next chemo is Tuesday, this will be over a week with everyday visits and overnight stays here.

 

                                                               March 12th

 

Okay Monday, lets try this again! New week, new attitude!

Let's go kick some Bone Cancer butt!

 

 

March 13th

The pneumonia is much better, he still has a yucky cough Today he had some IV fluid and an outpatient

Chemo treatment.

He was very tired and weak so I had to carry him to the oncology clinic (no wheelchairs & too tired to use crutches all the way). He has lost 5 lbs. thats a lot for a boy of his size. He started to cry because he thought he would get a feeding tube today. Tomorrow home health will bring supplies and I will learn to access his port (IV) and he will continue fluid and nutrients (TPN) through a constant line at home. I will also learn more about placing and using a feeding tube. He will not start using the feeding tube unless the IV nutrients are not enough.

He is not eating well, nothing tastes good and he's never "hungry". He already has some mouth sores so I don't think that helps the situation.

He wakes up every night just after falling asleep with very bad back pain. Tonight I wondering if it might be his kidneys. This type of Cancer requires heavy duty very aggressive Chemo meds so he is already having the nasty symptoms : (

Including all of the above!

No more Chemo until Tuesday, then we have an inpatient 5 day treatment. I hope he feels better tomorrow. ♥

P.S. I rented the movie Jack & Jill. Tristan was laughing so hard many times during the movie! It was good to see him laughing even though he didn't feel well! He is so adorable. Tanner is doing well too, he has been taking care of the bunnies and dogs all on his own. He is such a good brother always praying hard for Tristan each night.

 

March 15th

 

Back at Primary Childrens again today with a fever AGAIN ...This fever thing really frightens me. He is so lethargic and wiped out that he cannot even keep his eyes open. He did not want to go back to the hospital but I was super stressed something was wrong. He agreed to go willingly if Tineil rode with us again, so she came and made that trip much easier for me. He had a fever so they took us right back and started  IV antibiotics in the ER. They also took another Chest x-ray (3rd in 5 Days) Then they admitted us back to ICS upstairs, 4th floor is becoming familiar to us. 

 

March 16th

 

Long day just  more waiting to hear what is causing the fevers. Tristan's ANC (blood count) count was Zero which means he has zero immune system, no fun. They continued antibiotics and inform us that he will have to stay at least 48hrs from when they started them we are staying another night. 
Chris is coming to stay the night with him again so I can go home and get some rest and be with Tanner for awhile. I went home Cleaned a little, caught up on laundry and moved Tanners furniture into his new room. Tanner moved down to the basement, we just had the Carpet installed and finished two rooms (yes during all this chaos). Tanner's room is a Red Sox Theme. I also made Tristans room a Surf/Skate theme. I hope he likes it when he is able to return home. It was nice and felt good to get something done at home for a change. 

 

March 17th

 

Staying yet another night for observation no fever today but he did have another panic attack last night. He has had a few of these now, mainly in the middle of the night. He wakes up in a sweated panic talking or crying things that don't make sense. His heart rate elevates to the point that the alarm rings. 
 Chris had the nurse come in- No fever, but he was sweating like crazy so may have been breaking past the fever? Medications can also be causing these, its a little scary.

 

 

Today I want to whine.... Feel free to skip over this post.
Today we should be at the airport flying out to board our Cruise ship that will leave tomorrow. We should be nervous and excited for our first family Cruise adventure! -Instead WE are all fighting to keep our Tristan healthy to fight this cancer.

 

 

 

                                                     March 17th Night & 18th Morning

 

He is starting to loose his hair and told Tanner last night "it's not bad I am just shedding like Georgia" (our Bulldog)

 

 

 

March 18th

 

 

Today Trisan has been able to stay awake a little more and is feeling a little better, but we are staying another night  due to his sodium is very low it's called SIADH-- Uhm yeah another very RARE side effect that usually does not happen. (Tristan is so special he keeps having the "RARE" things happen)!

 

 

 Chris & Tanner are coming up again to spend the day with Tristan!

 

The hair is going quickly now....Chris is bringing the hair clippers....He will be bald today!

Both pictures he is swiping hair off his shoulder. he had hair all over his clothes, face, blankets, pillows EVERYWHERE. 

                                                                 Love this boy!

 

 

Round 1 - Still fighting

This week has been long! Tristan Had his first week of Chemo therapy which consited of Inpatient treatments on Tuesday and Wednesday. We were able to come Home Thursday morning but he had began a little cough & temp while in the hospital.
Friday he started to run a fever and it keep rising throughout the day. I called the Oncology Clinic at primary's and they wanted me to get hime there as soon as possible.
This was a little scary for me, and Tristan was MAD! He did not want to go back to the hospital.
My sister Tineil rode up to PCMC with Tristan and I. I was grateful because Tristan wanted her there and was more willing to go when she went with us.
I promised that he would not have to stay the night (thankfully I was able to keep that promise). They checked his blood and counts, examined him, administered antibiotics and fluid via his "Port" and were able to send us home.

 He has been sleeping nearly all day today. When his fever peaked and he was so out-of-it that he started to hallucinate, finally at 2am it subsided. I could not sleep -Again-  glad that he is able to though, his little body needs this break after our long week!

A friend (Braxton) from school brough Tristan some cookies today. he has not been eating much, but he ate a cookie : )

Welcome Home after first Chemo

Today is a Good Day. I learned how to be the Cancer mom & Nurse we were finally discharged.
I was nervous to bring him home because he has a little cough and had a low-grade fever last night. From this point on the word "Fever" will forever haunt me, at least in Tristans case. If he has a fever over 100 I watch it for an hour if his fever is ever 101, I am to rush him to the ER, PCMC or call 911 if other symptoms develop. In Cancer patients the word "Fever" is a very bad word. This is what scares me most right now, I feel like I am taking home a delicate newborn (only he is sick). I am afraid, but so happy that he will be home with his family for a few days.
WELCOME HOME TRISTAN!

Dad shaves his head

 The first question tristan had when he heard the word Cancer was "Am I going to lose my hair?" Uhm...Yes you are.

 Chris came home from work and told Tristan he was going to shave his head, at first Tristan did not want him to do it, but he started to enjoy seeing all that hair come off!!

Tanner and several friends and family member have volunteered to shave their heads too.

I told Tristan That I was going to Shave my head also and he said, "NO MOM! You will be ugly"! Lol one thing about Tristan is that he has always been what I call brutally honest.

Chris is so handsome with or without hair, and Tristan certainly will be too! Way to go Dad!!!

Hospital

He was fine until a little after 9 when Chris and Tanner had to leave. He is required to go to the bathroom every 2 hours to cleanse the chemo from his tummy & kidneys.- not fun when you have an IV and crutches.

Chemo is everything they said if would be. He was sick for a little bit, restless and could not go back to sleep & very sad : (  This boy did not "complain"one time throughout any of this! He is such a trooper!
He is awake and doing ok again now. He has 1 more Chemo medicine tonight at 10. Then we should be able to come home tomorrow after I learn how to be the nurse today.

Today they unwrapped his foot where the biopsy was done, this is the first time seeing it since the surgery.

Tanner was so excited to visit him in the hospital and shower him with gifts. These boys are BFF's!