Tuesday June 30, 2009

What a day....It really was not a great start today. Shannon (mom) was not feeling so great through the night and woke up with a sore throat. That is not uncommon for any of us right now, but when you have a child with no white blood cells, its bad. She had to call in sick today and that left the door wide open for me (aunt Tammy) to go help! What a blessing for me to be able to spend some time with Seth today, here's how it went:

When I arrived Seth was asleep. About 45 minutes in he woke up - happy! We started coloring and playing with a couple of little toys Great Granny sent for him and then we really got crazy! The Child Life team specialist visited and asked if Seth would like a mat in his room. This is like a gym mat. They use them to encourage play time. WELL, in order for that to work, we had to give his room a makeover. This included moving his bed and opening up his room nice and big. When we did that, there was no turning back, Seth was off and running! We played on his mat for quite a long time and he actually was happy to get dressed, in clothes! Uncle Nick came for the next shift and they played and looked out the window and really moved around. The funnest part of the day was when we had Seth laughing! Oh that brought tears to my eyes, it was awesome!

Seth's white count in at 0 as I mentioned earlier. He cannot go home until that is up....and, something else I learned is he can't start the next round of Chemo until its up! So, please continue to pray his white count will start coming up! Also, don't forget to pray for mom and dad...they are tired and need the strength! Thanks for all the love and support! We love you all!

CT Scan results

The results are in....the head scan was clear, nothing showing any concern. The chest one did show an infection in the lungs. This they believe is a fungal infection which causes them concern because they are harder to treat. But they are treating it and believe they can get it under control.

This is good news, relatively speaking. Keep praying for Seth, lets get this infection cleared up, Seth eating and taking meds so they can all have a break from the hospital! Thanks everyone!

Sunday June 28, 2009

Well, tomorrow is going to be a big day for little SethMan. He is scheduled for a CT scan of his head and chest (upper body) area. This is primarily to see why he was having inflammation of the stomach and what is causing a fever. Darin said last night he got a significant fever fast and it went away fast. My question was about the masses that they found originally; have they shrunk? Well, Darin said they have. The Doctors aren't to concerned about them at this point due to the fact that they aren't tumors, but masses. So, the Chemo should have shrunk them and it did.

Darin also commented on the fact that they are all getting a little tired. Seth hasn't really been out of his room for a month. Darin and Shannon are getting tired too. There are some long days in that room. If any of you can visit, or possibly help cover some time, let us know. Any time out of the room for Darin and Shannon is welcome and sometimes a way to keep sane for another day. Please remember, no sick visitor's!

Keep Seth in your prayers tonight and pray for positive result from the CT scan.

Friday June 26, 2009

FINALLY, after two long weeks I got to visit Seth. So, bear with me here, there may be lots of information due to the fact I spent some time with him.

Some of the pictures will help explain, but he was sleeping when I arrived. He has to have oxygen close and believe it or not, he senses its there and "bats" at it in his sleep. You can actually feel slight air movement, but I found it interesting he was feeling it enough to be bugged. Also, he has a new tube in his nose in addition to his pic-line. When he woke up, he wasn't really very happy. He did settle down when he was able to get down off the bed and pick a movie...interesting, he picked "CLICK"...he thinks its a video game :) He also really loves his water. He drank quite a bit of it tonight while I was there. I imagine it must feel good on the sores in is mouth and throat.

Tonight was note-worthy for two reasons. Reason number one....he pooped! Now people, this was no ordinary poop, just ask Darin. It was impressive, especially to the nurse! Needless to say, they are taking him off the Miralax for now! Way to go SethMan and boy was I glad Darin was there to change it!

Second cause for celebration tonight...Seth had a bath. A real live, sit in a tub full of water bath! He wasn't to thrilled with it at first, but he did settle in for a few minutes of fun with some water guns, which by the way, I think I was more wet than Seth! Grandpa helped though! I hope he sleeps well for Darin tonight, they both look like they could use some good rest.

Right now Seth is still fighting for his chance to go home for a few days. He has some requirements he has to meet first. Everyone seems to be working at getting him to that point. Also, focusing on getting him to wear a mask so he can leave his room for some time 'out' will be great for him and mom and dad. So PLEASE continue your prayers on his behalf, we appreciate all you are doing!

Oh yeah....there is more information coming about the motorcycle ride in July, look for it and let us know if you interested in riding, donating, or helping in any way! Thanks!

Update 6/25/2009

OK people....I have been out of town / out of computer range for a few days. However, really no updates until now.

Seth has been in a lot of pain...a lot. This is not unexpected, its leukemia, meaning its in his bone marrow, meaning his bones hurt. Also, he has sores in his mouth and throat; side effect of the Chemo, these causing lots of pain. Also, after a CT scan yesterday they found an infection where his small intestines meet the stomach. They can treat the infection with antibiotics, however he can't eat. Not that he wants to, but until the infection is cleared up no food.

Now, to today...because of the pain he has been on pain medication. He is alternating (from the last information I got) between morphine and Oxycontin. This morning Seth stopped breathing. It is believed right now that this is due to the amount of pain medication. Not on overdose, just a lot for his body to handle given the level of strength he has right now. They are currently flushing out his body which is making the pain high, but they believe they need to pursue a different course of pain maintenance. Right now, Darin says he's resting. I will update when we know more, but PLEASE say a prayer for him now, this is a scary day for Seth and his parent's.

FATHERS DAY 2009

WOW. First of all Happy Fathers Day to all the Dads out there! Dad and Seth are hangin out today. Dad got training on how to change his bandage covering his pick line and then did it on Seth. SO MUCH EASIER ON THE DUMMY ARM!!!!!!!
Today Seth received both platlets and red blood cells he is not feeling great but the nurses and doctors are on top of it trying to keep him compfortable. The current focus is to try and bring his ANC (absolute nutrafill count) up over 500, him taking his oral medications on his own and eating and drinking enough to stay healthy. Once those 3 things happen he will be able to go home for a bit. We cannot thank everyone enough for everything!

a reminder for everyone that there are several events that friend and family are planning as fundraisers.
A motorcycle ride to bear lake in july.
An archery shoot in july.
At this point that is about as much as I know. If anyone is interested in knowing more post a comment with a way to send you information.

Saturday June 20, 2009

Today Seth is doing OK....as of the last update, Darin has noticed that some of Seth's hair is starting to fall out. I think this was a hard reminder of what was really going to happen. However, he is still trying to eat and talks and plays and the goal is to get him strong before the next round of Chemo.

We want you to know how much we appreciate those of you who have donated to help this little guy. It is a strain on his family emotionally and physically and what a blessing to see the help they are receiving financially. What an answer to prayers you all are!

Happy Father's Day Darin, you are awesome!

Motorcycle Ride.....

Uncle Nick is planning a motorcycle ride to help raise money for Seth's medical bills. This is going to take place in July. If you want additional information, please leave a comment and we will get you more information. Thanks!

There was no new information today and that is good news. I just talked to Darin and he was ready to scream...he finally had SethMan asleep and they came in to do vitals and woke him up....meanies! Good luck Darin, hope you get some sleep!

Wednesday June 17, 2009

Seth is starting to realize the effects of the Chemo. He is feeling some pain, according to mom and dad and they are giving him some medication to help. His 'counts' are still really low...this is causing him to pass-out when he gets mad. He met with a speech therapist today to try and help him with some words...he hasn't been real interested in talking yet! This is something that was planned prior to his diagnosis so we are grateful they are willing to continue this course so he is able to communicate.....well, atleast more than "no"! Uncle Nick has been able to spend some quality time with him tonight and I am sure that is fun for all! Seth may have some challenging days ahead, please keep him in your prayers and know we are so grateful for your support.

You can leave a message for Darin and Shannon by signing it anonymous and leaving your name in the message if you don't have a google account to sign in with.

Officially in "count recovery"

He is officially on "count recovery". Which means they will be monitoring his blood counts for the next 18 days to see if they can get him well enough to go home for a few days before round 2 begins. He also had platlets today, which Cheri and Holli call "orange juice". Darin is going to attempt to give him a sponge bath......poor little guy hasn't had a real bath in almost 2 weeks. Let's all cheer for the SethMan........go blood!!!!!!

Last night of chemo "round 1"

Well tonight Seth received his final dose of the first round of his treatment. Tomorrow will start his 18 day "count recovery". Hopefully all will go well so the little guy will be able to spend a week home with brother and sister. We are making friends with most of the nurses up here and developing little games with each of them. Shannon (mom) and Darin (dad) could not be more grateful for the kindness of the entire staff up here. A great big hug to everyone in the ICS @ PMC!!!!!! Thank you everyone for your prayers, help and wishes!

Sunday June 14, 2009

Well, at the end of the week, we can say it has been a good week for Seth. He is doing well and doing what they (the medical people) expect him to be doing. We are anticipating we will find out more information this week on how his body is responding to this round of Chemo. Today his red blood count is down a little. This is not great, but not unexpected. They will continue to watch this. He has lots of toys to play with and lots of movies...although I think he has only been watching Ice Age when I have been there :)!

We had a family reunion tonight for the Bollschweiler's and there were many concerned family members who were able to convey their love and support to us, to pass along to Darin, Shannon and Seth. It is wonderful to have such amazing support all around at this time and we appreciate it all!

Awe...... an afternoon with brother and sister!

A good day....Isn't he adorable! Corbin and Jenna are happiest when they are with Seth and were very excited to go see him!

Friday June 12, 2009

Aunt Tammy (me :) got to spend time with SethMan tonight! FINALLY! He was asleep when we arrived, but woke up when Mitch (the nurse) came in to bug him. After a short verbal tongue lashing, he was a happy clam! We colored and played and worked on some yogurt and pretzels. Seth's white count is at 0 and now the vigilance for no germs is even greater. However, his red count is still in normal range. Seth is settling in to hospital life rather well. When they come to get vitals, he sticks out his leg and toes and lets them. (it is really cute) He isn't so fond of the medication, and HATES the eye drops they have to give him every four hours.

Also, here's a little insight from the nurses.....Seth, GREAT sleeper, Darin, snores and Shannon never sleeps! Keep them in your prayers, they feel your support.

Just some good 2 year old fun!

Seth loves animals really loves dogs and loves to pretend to act like one so grandma, uncle nick and dad decided to encourage him.  Hope this video works.

Charity account for Seth is available

There is an account available for donations to help cover the medical and living expenses. It is at:

America First Credit Union
Seth Charles Bollschweiler

You can write a check in Seth's name too and give it to any member of the family and it will be deposited in his account. Also, you will see a PayPal link where donations are being accepted. We are so appreciative of all you are doing for our family and feel many great blessings coming to our family from so many wonderful people. If you have any questions, please email Tammy at dtwebarker@msn.com. Thanks again.

Wednesday, June 10, 2009 WEEK ONE DOWN!!!

So much has changed in the last week. I can't believe one week ago tonight, Seth was in the ER for swollen gums. Amazing how wonderful the hospital staff has been at getting things moving and getting Seth on the road to recovery as soon as possible. Having said that, Seth had a good day. He spent time with his Grandma Kathy and uncle Nick as well as Grandma Tessa and Mom and Dad. He got a much needed sponge bath tonight and hopefully can play with some water again tomorrow! He ate today and as you can see from the picture, he is enjoying his dessert.

I know I keep saying this, but we are ever grateful for your prayers on his behalf, and we KNOW they are being heard and answered.

Tuesday June 9, 2009

Another good day! As they expected, SethMan is feeling better every day. This is due to the Chemo killing the bad guys (of course it is killing the good guys too!) We have been told to expect him to start seeing more of the side effects from the Chemo as the 10 days of treatment continues. We are happy to take these good days and pass them along, and we are certain all the prayers are helping, so keep them coming!

PS: Can you find SethMan?

New update

Seth had a decent night according to Darin. That was exciting news and we hope they both got some sleep. This morning Darin called and said that further testing has shown that Seth has contracted the Swine Flu. He is on antiviral medication, but please be aware if you are planning a visit!

Keep the prayers coming, we are encouraged everyday by all the wonderful support.

Monday June 8, 2009.....a "good" day

Today the results for the spinal tap were good...no cancer cells found there. The bone marrow biopsy may take up to 10 days...this is show at what level the cells have progressed. Basically, low, moderate, advanced. However, Seth is getting more more irritated by all the people bugging him. Believe it or not, that is good. He is eating a little today and he is sitting up on his bed. He was playing with toys and interacting some as well.

Darin went back to work today. He was able to get basically a full day in. Grandma Tessa is here still helping and Shannon was able to be at the hospital all day and then get home to get the other kids tucked in for bed. It is a routine that will have its challenges, but it has been amazing how well it is working for now.

BTW....some have said they can't leave comments. please try again and someone let me know if you still can't! Thanks

Sunday June 7,2009

Well, today was OK, according to Darin and a "good" day according to others. Seth is just plain mad and really wishes everyone would just leave him alone. Day two of a ten day Chemo treatment, then an 18 day "recovery" before another round of Chemo. Seth was still running a fever today and it reached close to 104....not good. It has come down to around the 101 range as of now. He also seems to have a faster than they would like heart respiration. So he is now sporting some lovely chest patches to monitor that more closely. The preliminary results from the spinal tap did bring some hope today as there were no cancer cells detected in the fluid. This is still preliminary, but good news.

This seems to be today's update and for all of those who where wondering, he did eat today...frozen yogurt, a couple chips, some peaches and he is still drinking! Good job SethMan, keep up the fight! We love you!

PS, is this not the cutest picture? A well deserved nap for both of them!

Recap of Saturday June 6, 2009

So you will notice that Seth is looking worn-out. What can I say, he is! Today he had a spinal tap and he has started Chemo. He is running a fever due to the fact he has a bacterial infection which is being treated with a ultra super mega dose of antibiotic. This is not uncommon with AML kiddos, but they are taking it seriously and treating it aggressively. He has officially started his chemo and it takes 6 hours to infuse. He also received a blood transfusion today. You may notice in the picture he looks a little red, this is a reaction to something he has been given.....honestly I can't remember what! They are treating that with good old benedryl and Tylenol.

He ate a banana and that was cause for celebration! He is a funny little boy and I think his favorite word might be 'no'! Even when he's asleep! Tonight when I was there he was playing with Grandma's phone...seriously it looked like he was texting! I think he may have been texting his friend to come bust him out, but she said no too! He is really into movies, so any great suggestions for movies are welcome. Darin also sends a plea for some good movies!

We are working to set up an account in SethMan's name for donations to help cover medical bills. This should be done first of the week. We have already had offers from a few organizations to hold benefit events for Seth and we appreciate it more than words can express.

We are fasting for Seth tomorrow and praying for him, Darin, Shannon, Corbin and Jenna! They are all doing great and feel so much love!

Update from Grandma Bennion

The lastest information as of Fri. 6-5-09.....The doctor said that it was a 97% diagnosis of AML ---Acute Myeloid Leukemia. There are still test results coming in for the next couple of days. There is now a treatment plan in place so now he begins that phase. Today, Sat. 6-6-09 he is having a spinal tap and then they will inject the beginning chemo meds. This is not the beginning of the actual treatment which if I understand correctly will begin tomorrow. The first phase will consist of 10 days of chemo, then recovery(total for phase I is 28 days). As a family we are so grateful for all of your prayers and help.

Just kidding....there is more information tonight!

The preliminary results are pointing to Leukemia. Now for all the technical mumbo jumbo I don't understand; please keep in mind this is just information but NOT the the final results, just what they are leaning toward and looking at closer. The type they suspect right now is AML. You can google it if you want to, but I won't try and explain it. They are right now taking him for an ECO Cardiogram, this is for a base-line before any type of treatment starts. They are also gathering all the blood/lab result to compile a complete history of baselines in order to start treatment. The Doctor said they can expect to spend quite a bit of time at PCH, and the treatments will begin immediately following the completion of all these tests.

Darin and Shannon are very grateful for all the support and love. You can leave comments for them here as they have access to this blog from the hospital. Thanks for all the prayers, and please don't stop!

Seth is out of surgery...here's the scoop: Surgery went well, they did do the bone marrow biopsy and place a pic-line. Darin says as of right now they are not expecting anything else today! (we hope) He is resting, but having some "night-mares" according to Darin. Hopefully they can get him calmed down for some good rest right now so that Shannon and Darin can get some sleep! Thanks for the support and comments!

Update....

Seth is going to have surgery again today for a bone marrow aspiration and to place a pic-line. I will let you know when he is out and his status...fyi, this morning he is running a fever, they aren't to concerned according to Darin and are going forward with surgery. Keep Seth in your prayers, this is a tough surgery.

SethMan

This is a Blog for Seth! This is a place we can all keep updated on our little guy....Which means, your comments are welcomed and wanted! I will try and update this blog when there is new information as well us a daily status update on the happenings of the day! So, here we go....

Where it all began....Seth has some noticeable swelling of his gums on Friday, May 29, 2009. He's two, at it appeared he was cutting the dreaded two year molar! However, it continued to swell and get bigger to the point of concern and a trip to the Doctor. Dr. sent him to Primary Children's Hospital (PCH) for further testing. A CT scan showed a solid mass - tumor had grown in his upper jaw and worked upward toward his eye. He was admitted to PCH - oncology on Wednesday June 3, 2009. On Thursday, the 4th he was sent for an additional CT scan of his body to determine further whether there was any spreading. Unfortunately, additional masses were found on the kidney's, lowers spine and lung area. On the night of June 4th, he went to surgery for a biopsy of the mass in the mouth. He did awesome through the surgery and is awaiting results.

Again, there will be updates on this blog all day and WHENEVER there is new information. Please feel free to visit often and leave comments for Darin and Shannon. We are ever vigilant in prayer at this time and know Seth is loved!