Maintenance Delay

Ty doesn't start maintenance tomorrow after all.  His ANC is 500!  I am super surprised cause it has been almost three weeks since his last chemo.  We were assuming he would be back to normalish right now which is why we let him go to primary yesterday.  Just goes to show you can't really have expectations with this kind of thing cause their bone marrow does what it wants and is different for every kid.  At first I was kind of freaking out cause the preliminary results before they did the manual count was 300.  My first thought was relapse...but now that I've seen the other numbers I think that isn't likely, he is just still reacting to the chemo.   HCT 33.6, WBC 2.3, HGB 11.8, PLTS 273 
We'll find out more tomorrow about when his next CBC will be and that will determine when his appointment will be. 

Happy Halloween!

We decided to get his CBC today instead of Monday cause he was starting to bruise and petechiae and we were getting worried that he might get too low before Monday rolled around.  The results: WBC 0.4, HCT 20.7, PLTS 20, don't have his ANC results yet but they will probably still be around 100 or lower.  So Brady took him up to the ER for a type and cross to get his blood matched up and then we go up later today so he can get a blood transfusion.  Its just for red blood, platelets aren't stellar, but not low enough to do a transfusion...and whites he just has to build back up on his own.

We'll post some more Halloween pics tomorrow after the festivities. 

We'll have to be really careful because of his lack of immunites.  I bought a variety of trick or treat candy so we could swap his trick or treat candy with a bag of candy that no one has touched.  He'll keep his mask on and we organized a trunk-or-treat at the park which will be outside and provides less of a risk that we will go to a house with sick people present.  Of course we will play all of that by ear depending on how he feels and what his ANC actually is.  He's pretty young so he won't notice too much if he misses.  He is also used to staying home while the other kids go and do stuff.  It is surprising sometimes how much he understands and how well he goes along with everything even though it really stinks sometimes.  His mellow-ness is a great blessing. : )

MONDAY:  PLATELETS ON HALLOWEEN...

So today (Monday) a couple of bruises on Ty's head looked weird...they were larger than yesterday and raised, (the pic doesn't do it justice)  we thought it was wierd so we took a pic and sent it to his home health nurse.  She forwarded the pic to his doc and up we went at 4:00 to the children's clinic for a CBC to see what was up...

Hanging out at the doc's office...yep, just as we suspected, his platelets were a whopping 6!  Normal would be between 140-440.  I organized a neighborhood trunk-or-treat at our park so Ty could trick or treat outside without going house to house...and I knew he would be sad if he missed it...

So we drove from the children's clinic back to the park so he could trunk or treat before we went to the hospital

The trunk or treat was cold but it was a great success!!  We are so thankful we have such an awesome neighborhood!!  It was a potluck finger foods and they brought the yummiest foods!  We had a great time and Ty got a giant bag of candy..which we promptly swapped out for a look-a-like bag of candy I made for him.  (Ssshhhh! don't tell him!  That way he isn't eating candy that many hands have touched...you know, the whole immune system thing)
 CBC today: WBC 0.5, HCT 30.3, PLTS 6, ANC 30!!! yikes! (a normal ANC would be between 1500 & 7300)

Dad took our little vampire straight from the park to the hospital for his platelet transfusion...he took his candy with him of course : )

They give him benadryl and tylenol to reduce the risk of having an allergic reaction to the transfusion...it knocked him out pretty quick

Don't platelets look weird?  They aren't red!

It was a Happy Halloween!!  : )  We hope yours was safe and happy too!!

TUESDAY:  Ty just looked at his job chart and said, "mom I don't have any jobs today" mom: 'oh really', Ty: "it says my job is to drag my candy bag around"  : )

Delayed Intensification Update

St. Baldricks St. Baldricks St. Baldricks St. Baldricks...wondering what that is??  Click on the link at the bottom of this post for more info...Can you believe people shave their heads for Childhood Cancer?

Look!! Celery!!  I feel like a super hero when he eats a veggie.  He's neutropenic right now so we are just trying to be super careful about germs and stuff and crossing our fingers that he doesn't get a fever. We'll take it as it comes though, maybe if we don't make any plans we won't end up in the hospital right?  he he he...if only

Ummm not sure if this is the safest place in the world to have a nap.  Ty's blood counts are pretty low right now which can make him tired...but really he's doing pretty good considering the phase he's in.  Tuesday's CBC~ WBC 0.4, ANC 200, HCT 26, PLTS 155.  Now on Friday they are a little lower at WBC 0.4, ANC 100, HCT 22.4, PLTS 64.  Pretty much no immune system and he's right on the border for needing a blood transfusion so we'll test him again on Monday and probably head up to the hospital for a few hours for some blood depending on the counts.  That's a fitting activity for Halloween isn't it?  I guess he could dress up as a vampire...nope he's gonna be mater, I know we should take advantage of his baldness and do something funny but he's three and has a mind of his own...and I am super ok with that.

His port is accessed right now cause he gets IV chemo four days a week.  Last week there was a little problem with insurance allowing chemo to be done at home so we had to go to the hospital four times.  We got hold of the clinical trial specialist at Tricare though so this week we got to do it at home. We are so glad we signed him up for a clinical trial!  Because of that everything goes through the clinical trial people and they make exceptions that the normal insurance wouldn't make. YAY!  We are so grateful for great insurance. 

He can't have a normal bath when he's accessed so I use those special bathing cloths from the hospital...he hates it. He hid behind the couch so I just brought the bath to him.



He feels pretty good, much better than he did during the first half of delayed intensification. See the cute chappy lips?  I wonder if that is a normal sign of low platelets or if he is just special...he always gets chappy lips when his platelets are low.

You wouldn't know that he is operating on super low red blood cells if you saw him playing outside today.  He doesn't play as long as normal of course, but it sure isn't slowing him down as much as you would expect.

Done today with the IV chemo Cytarabine and will be done Tuesday with the oral chemo thioguanine.  Now we wait a couple of weeks for him to recover and then we start Interim Maintenance II which is a visit to PCMC for chemo every 10 days.  That lasts for two months and then he starts maintenance which I think is oral chemo every day but we only go down to Primary Children's once per month.  I think that will last about 30 months, not sure exactly yet. 

 I have some relatives in Logan, Utah who were inspired by Tyson to hold a really exciting event to raise awareness and funds for Childhood Cancer.  They are absolutely INCREDIBLE!!  Several of them are shaving their heads (yes, some females included) to raise funds for a super fun fundraising group called St. Baldricks.  Ty has a page set up on their website that you can access here.   And the St. Baldricks event that they are holding is at Rocky Mountain Dermatology in Logan, Utah on November 9, 2011 at 5:00 pm.  Address: 550 E 1400 N Ste Q  If you are interested you can click HERE for more information and to donate.  Every little bit helps so if you can even do $5.00 that would be AWESOME!!!  I am ETERNALLY GRATEFUL for organizations like this, without them Tyson's chances of survival would be 10% instead of 95%!!  I can't say thank you enough to the great people who put things like this together. 

THANK YOU Utah Cousins!!! 

And Thank You St. Baldricks for helping more bald warriors survive!!

We Are Home! Swore Farms Corn Maze

We are home!!!  Thank you Gavrila, Brent and Porter for the fun surprises!

As soon as we got home mom made the noodles Ty was asking for while we were at the hospital, they hit the spot and increased his mood...so much that he wanted to come to the corn maze with us!

There is a family friendly corn maze close to our house, we ate dinner and headed right over

It rained on us, but we didn't mind, we were having too much fun!

Swore Farms let me pick out my own pumpkin when they found out I was a cancer warrior

Thank you Swore Farms!!

See his muddy knees?  His legs are really wobbly right now, dexamethasone does that to him...He fell a lot, but that's ok, he just got right back up and kept going, he is feeling really good!  Eating well, drinking well, and talking A LOT!!  That's how we can tell he is feeling good!!

We had hot cocoa and a lesson to finish off family night

Words cannot describe how good it is to be home, to hold my little happy IV pole, hospital bed free buddy.  Happy Day! He is so happy right now!  Priceless!   : )              His ANC is still only 154 but his doc let him come home anyway, he just has to stay on antibiotics until his ANC goes up.  Woo hoo!   He's very excited to hide from Michelle (his home health nurse) when she comes to give his antibiotics.                                        

Our Day at the Hospital

Saturday, Oct 8th.  Still here of course!!

He had a fever all day yesterday, but it finally went away last night and he feels a little better. He has a dry persistent cough, probably still that darn rhinovirus he tested positive for a couple of weeks ago.  Chest xrays were clear, so no pneumonia and we are still waiting on the blood culture results.  If those come back clean they think it is some kind of virus.  If they don't, well we'll take it from there.  We should know those results tomorrow morning. (Sunday)

They found one band under the microscope today which in the large scope of things does not mean much, but when you are up from all zeros that's improvement! I know that sounds technical but its really not, if you look at a CBC readout (complete blood count) you will find segs, bands, and white blood count.  Add segs and bands together and times that by WBC and you have your ANC, Absolute Neutrophil Count, otherwise known as the number they use to determine your ability to fight infection.  So today Ty's segs are 0, bands 1, and WBC is 2.0 you have to move the decimal of WBC to the right one and that would make it (0+1)x20=20  ANC is 20, which shows up on the results as a zero, but hey I'm counting it as improvement. : )  His other results are HCT 32, PLTS 124, and I think dad said his weight this morning was 29lbs~ up a little I think because they have him on fluids cause he isn't drinking enough

He couldn't get himself to eat his sandwich, but he did have fun cutting it into little pieces. I did get him to eat one bite of yogurt though...yay intestinal flora! : )

The kids came to visit after they went to the community welcome home soldiers day at ISU.  A couple of his Aunties came to visit too, and brought some toys

They had to wear masks.  Isn't that hat cute? Brenna made it, she's making an orange one for Ty

Brooke and Emily took turns decorating the pain scale faces on the white board

Ryan got reaquainted with the Robots game he used to play on the computer

Ty has been pretty grouchy today, he's been asking if I will make his favorite noodles when we get home...something homey to look forward to I guess.  He wanted mom to snuggle so he could have a rest...

and he's finally taking a nap

which is really fun for mom...but not so fun for dad when he comes up this evening for the night shift. he he!  Ty has been asking all day when dad is going to come back.  He likes his fun dad
Last but not least THANK YOU for the prayers, dinners, and concern.  Your love lifts us when things are hard.
*Oh and THANK YOU STEVE for coming over and shampooing the puke smell out of the couch : )

At the Hospital again

Update at 2:00, so far we are doing fine, Ty just woke up from a VERY long nap and is watching Tom and Jerry.  Brady and the kids are picking apples at the neighbors and Brady made them his specialty Ramen soup with potatoes, onions and carrots.  They are having a great fall day and mom is resigned to the fact that being at the hospital is now part of normal and is enjoying her quiet time while it lasts.
3:00pm He took three bites of his turkey sandwich, and gagged and almost threw up each time.  He also ate one noodle out of his chicken soup.  Am I weird to be happy that he actually got food in his tummy?

Tyson was doing pretty good Tuesday and Wednesday, even eating pretty good...

He was up and around for a lot of the day

And smiling!!

Thursday he didn't eat much, and puked up what he did manage to nibble down....then started to fever in the night and here we are at the hospital again, waiting for blood tests results and cultures to see what's causing the fever.  Whenever there is fever we have to go to the hospital cause there is potential for serious infection when they are getting chemo and immune compromised.  I was dragging my feet at 3:30 this morning cause I didn't want to take him in.  When i finally called the oncologist at 5:30 she was kind of alarmed that I waited so long.  She called PMC and got us directly admitted.

Ty was pretty mad that we weren't going to the horsey doctor (PCMC) but dad did his fatherly duty and rounded up a gamecube and now they are having a grand time playing Robots.  And here we sit waiting for test results and culture results to see what he has and see if we have to stay inpatient.  If his ANC is low he will be staying. 

Update...ANC is a big fat zero so I'm sure we will be here for a few days.  HCT 33.3  PLTS 104  WBC 1.6  just putting that in here for my records. :) oh and weight was 28.8lbs (13.1kg)

Tummy bug update

And here we are tonight!!  Oct 4th.  Ty is feeling pretty good!  He is even sitting up a little and agreed to stand up for a pic!  He hasn't vomited today and even nibbled on a cookie tonight.  He lost a lot more hair today so the top of his head is fuzzy and the sides have patches of bald, patches of thinning hair...so cute!

Thank you for the prayers!! It is truly a miracle that his diarrhea only lasted twoish days!!  Merin had it for almost a week, and Ryan had it for at least three days so you can see that if our little immune compromised one only had it for a couple of days it is truly a miracle!!  We are so thankful he is doing better!!  He weighs 29.6lbs right now (13.5kg) so we are just going to work on hydration and food now.  Thank you thank you thank you for the concern, love, and prayers!!

The pics and post below are from earlier today...

Ty just ate some ramen noodles...he's asking for zofran now cause he says he feels like puking but we are hoping it all stays down.  His diarrhea this morning was way less watery than yesterday so we are hoping that is a sign that he is on the mend...I know, TMI but that's how it goes around here.   :)

we are crossing our fingers that he got rid of the dastardly tummy bug organisms when he puked that bazillion gallons last night.  We'll keep you posted.

Grandma and Grandpa brought him some balloons, toys and crackers and he's watching the Tom and Jerry dvd they brought him.  They also brought mommy some caramel chocolates and the other kids a balloon.  Grandma kitty kat brought some dinner over too.  Thanks for the cheer!!   He woke up with a headache today so mom gave him some oxycodone (he's not allowed to take Tylenol or Ibuprofen) and he was in a good mood all morning.   :)    I can see why people get addicted to that stuff.

Tuesday, Oct 4th

Thanks for the prayers!!  Ty is a little better today and we can't help but stop and think about what a wonderful blessing cancer is...I know that sounds wierd cause cancer stinks, really stinks, and it is so hard to watch your little one be sick, and pump him full of poison, and wonder if he's going to make it through it all.  I read a story another cancer mom posted about how cancer unlocks the love that people keep locked up inside.  There are many ways we have been blessed during the last few months, so much so that I can't think of them all while I write this post.  The love that we feel from so many is definitely a blessing and lifts us. We are part of a world now that not many people see, the suffering some of these little ones go through makes Tyson's treatment look like a walk in the park.  But these little fighters are unique and I feel like they are on the earth and in our families to open our eyes and our hearts to remind us about what is most important in life.  They are our angels on earth and we are blessed and lucky to have one of them in our family!  I know what you can do for us!!  If you are lucky enough to have a spouse make things right with him or her and don't ever let anything get between you.  Treat your husband like he is your superhero...cause he is!!!  If you are lucky enough to have kids hug them tight and cherish them while you have them.  That's what you can do for us, if we know that Tyson's sickness helps keep your family together then it is worth all of the fears, anxieties, poisons, and pain, after all, he won't remember much of this, so the lessons to be learned are for us, and you, not so much for him.

I know reading about Tyson and other cancer cuties invokes a feeling of wanting to do something.  Other than hugging your kiddies a little tighter and kissing your spouse a little longer, if you would like to do something may I be so bold as to suggest getting involved in some way with CureSearch?    CureSearch funds the children's oncology group who are the frontrunners responsible for increasing the survival rate from 10% to 78% over the last 40 years.  Tyson is in a clinical trial for them right now.  Not only do they need a higher survival rate, they need better treatment.  The effects of the chemo on their little bodies can last a lifetime, and can even cause secondary cancers.  We will be participating in a walk for CureSearch next summer, I hope you will want to join us!!   :)  And thanks for your patience with me and reading about all of this, I know we are not unique in having trials, we all have 'stuff' to deal with that is important, so thanks for taking the time to add Ty and other cancer cuties to your prayers and thoughts.