Clinic today

 Backing up a little bit cause I never got a chance to report on birthday and Christmas!  He had a great birthday, we did a combo party with his December birthday siblings Ryan and Merin so this is his 'section'.  He wanted a batman birthday.  It is hard to believe he is 5!!

 Like I said on the last post the night of his birthday we ended up in the hospital with fever.  He didn't feel well the next day and slept for most of the afternoon. Probably a combo of the steroids he was on for the croup and just feeling ill in general.

 He did perk up enough to catch a cookie in his mouth doing the minute to win it game at a family Christmas party.  He has the pale face and red around the eyes that he always gets when he is on steroids.

He felt a little better each day and we got to hang out with family on Christmas Eve.

We had a fun Christmas morning, Santa brought him what he wanted and then some.  He still has a cough and not as much energy as his cousins and siblings do, but he's hangin in there.

 After we opened presents we went with a few cousins and performed a little Christmas music program at a retirement home.  It was a great experience. We are glad Ty's Aunt Melissa put it together and invited us to come.  It was also a miracle that Ty didn't cough once while we were there.

 And so we get to clinic today.  I'm sure you can't guess what they are doing in this picture..We got to meet and say hi to a couple of 'cancer buddies' today that we have followed a little bit online.  Both of them are bone cancer survivors and have had an amputation of a lower leg.  Tyson was very interested in their 'Iron man' prosthetics.  They are real heroes.  I also got to chat briefly with a neighbor who's daughter has been there for weeks recovering from brain surgery.  We were happy to see that they were packing to go home.

It was a back poke day (chemo injected into the spine) so he is getting ready for sedation here

 And waking up from sedation.  It is amazing how routine this has become.

 There was a special treat at Primary Chilren's today, Jenny Oaks Baker and her children put on a musical program.  We stopped on our way out to listen for a few in the jampacked 3rd floor hallway.  Elder Oaks was there too.

 No fountain to throw coins in...for some reason Tyson thinks he needs to tromp through every bit of snow he encounters.  Since he was on dad's shoulders he felt like dad should tromp through it instead.

 We brought the kids with us so we could go see the lights on Temple Square. It was spectacular of course!  We love to see the Temple!

We also used our Olive Garden gift card that we got for Christmas from a very generous Grandma and Grandpa.  Thank you!

So Ty stays on same doses of oral chemo for now. (1 MTX Thursdays and 1/2 6mp 4 days a week)  His counts are pretty good but his liver something levels are a little high so they are going to keep an eye on that.  They told us not to worry about it but to call if he turns yellow. We thought that was a little funny afterward...Anyway here are his counts, oh and he weighed 17.1kg, same as last month.  and he grew a teeny tiny to 99.2cm.  ANC 1800, WBC 3.6, RBC 3.61, HCT 33.3, ALT 201 (normal range 10-25), AST 96 (normal range 15-50).  I guess it is pretty common for his type of chemo to irritate the liver...or whatever it is doing to it so they will just keep checking those levels when we go in.
Thanks for checking in!  Happy New Year!

Little ER Jaunt

Ty had a great birthday!  He is 5!!!!  We did a combo birthday party a couple of weeks ago for all of our December birthday kids so on his birthday his dad and grandpa took him and Ryan to Bamboo Garden and Outer Limits for some birthday fun. 
Brady put Ty's blanket back on him last night as we were headed to bed and he felt hot so we took his temp.  101.4.  Darn.  He was breathing heavy and had started a croupy cough after he went to bed so we knew it was probably just from that but we thought we should probably stay on the safe side and call Primary Children's to see what we should do. 

Of course they said to take him in cause any time you have fever with a central line you have to go see what his counts are and do blood cultures.  We got there at 12:15 so it officially wasn't Tyson's birthday anymore. 

We snuggled and snoozed off and on and they gave him some steroids for the croup and some tylenol for the fever.  Luckily his counts were great and we got to go home about 4:30 this morning.  I didn't get them all, but his ANC is 2300!  That is good news right before Christmas!  If it stays that high I imagine they will up his chemo pill dose a little when we go next week so we will see.  We are just glad his ANC is great and we don't have to stay there for a few days.  Merry Christmas!

Heartbreak

Ty is doing great!  I'm just so sad for some of our 'cancer buddies' today who thought they were clear and cancer free only to find out they are yet again fighting, one of them fighting A.L.L. for the third time.  I am heartbroken for them.
I am speaking at a Relief Society function tonight about our experiences with Ty and so a lot is fresh on my mind as I think about these sweet little kids who yet again have to suffer so much and who's parents hearts are breaking.  I never realized how blessed I am to have a dad who taught me about suffering long before I experienced Ty's diagnosis while my hubby was in Iraq. I feel guilty that everyone didn't have that and I feel like I should share with you what he taught me.
 He said two things that have always stuck with me and have come into my mind when I am at my lowest: "Pain comes, Misery is optional" and never ask the Lord "why" always ask "what now".  The 'why' is already answered, cause we are on the earth to suffer, to be tested, and to still find the joy. We are taught about Jesus in a way that is too simple, His atonement reaches much farther than the ability to repent when you steal a candy bar.  He suffered ALL that I and those sweet children suffer, He knows my pain personally.  He won't take away our pain and suffering, but if we are willing to get on our knees and ask He will take from us anything that we can't handle.  I try to keep control of things and beg and beg the Lord to keep my husband alive when he's at war and beg and beg to keep Tyson alive and make him not relapse, but I learn over and over again that I can't really pray for that, I have to give that up and say in my prayers please give me the peace I need and help us be okay no matter what happens.  Cause in reality husbands and daddys do die at war, children do die of cancer and suffer so so much and it is a part of life. It makes me think of the widow who had to travel on foot with her five kids and buried each one of them on her journey and stayed faithful, of my friend who  just had her 12th (I think) miscarriage and almost died of it while her husband is layed off and her 7 kids have had all sorts of serious medical problems including one who almost died because a girl at school was mad at her and slammed her head in a metal door, she feels broken and spent and yet she remains faithful, of Joseph Smith when they poured hot tar on him and his babies died from exposure, and he spent many days in a dark cold jail missing his family so much and when he cried out to the Lord, the Lord replied in D&C 122 verses 5-9:

"5 If thou art called to pass through ^atribulation; if thou art in perils among false brethren; if thou art in ^bperils among robbers; if thou art in perils by land or by sea;

6 If thou art ^aaccused with all manner of false accusations; if thine enemies fall upon thee; if they tear thee from the society of thy father and mother and brethren and sisters; and if with a drawn sword thine enemies tear thee from the bosom of thy wife, and of thine offspring, and thine elder son, although but six years of age, shall cling to thy garments, and shall say, My father, my father, why can’t you stay with us? O, my father, what are the men going to do with you? and if then he shall be thrust from thee by the sword, and thou be dragged to ^bprison, and thine enemies prowl around thee like ^cwolves for the blood of the lamb;

7 And if thou shouldst be cast into the ^apit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the ^bdeep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to ^chedge up the way; and above all, if the very jaws of ^dhell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee ^eexperience, and shall be for thy good. 

8 The ^aSon of Man hath ^bdescended below them all. Art thou greater than he?

9 Therefore, ^ahold on thy way, and the priesthood shall ^bremain with thee; for their ^cbounds are set, they cannot pass. Thy ^ddays are known, and thy years shall not be numbered less; therefore, ^efear not what man can do, for God shall be with you forever and ever."

 

 When we suffer without getting on our knees we suffer more than we can bear.  God knows you personally, loves you, and ALWAYS wants you to turn to him no matter how angry, unbelieving, sad, broken, or even how happy you are.  Going to church is nice and important but it cannot save you, the gospel of Jesus Christ happens inside you, in your heart.  I can do hard things, but I need Jesus to get through them.  If I turn to God I can handle anything this world throws at me. The End.

 

CBC, Make-A-Wish

Ty got a CBC Monday night to see how his numbers are since they adjusted his chemo pill dosage at his last appointment.  His ANC is going up a little bit. ANC 700, WBC 2.5, HCT 35.5, PLT 343  I haven't heard from clinic yet so we don't know if they want his doses to continue at the same level or not but I'm assuming they'll just keep it the same.

 He did pretty good with his steroid pulse this time.  I didn't really see much difference in him other than reacting to things with more emotion than usual.  His brother was on a 5 day stint of steroids at the same time for asthma.  For some reason they gave him a liquid which tasted horrible and he was a really good sport when Tyson wanted to administer it. Ty loves it when someone else has to do something medicalish...he was happy to watch all of us except him get our flu shots last week. (He got his at the same time his new port went in so he could get it while he was 'under')
Some wish granters from Make-A-Wish stopped by with gifts for all of the kids last Thursday!!  Tyson got to declare his wish to go to meet Mater and Buzz & Woody and go to Disney World and I filled out so much paperwork that I forgot to take a picture.  The kids (okay all of us) are very excited.  We went to high school with his wish granters and found out that their son is an 8 year survivor of A.L.L.!  Make-A-Wish Idaho posted Ty's picture and wish on their facebook page a couple of days ago. 

Making faces at dad...Merry Christmas!  His next appointment is after Christmas so if everything continues to go awesome we won't update until then.  Thanks for checking in!

Clinic today

Ty is still doing awesome!! 

 He still likes to take a few breaks in the day and sit on my lap and watch tv for 'snuggles' but he has enough energy to tackle his brother the rest of the time

 Lots and lots of hair!  See his port? it sticks way out this time

He had a CBC again the week of Thanksgiving and his counts were still great! I was surprised that his ANC was the same as the week before: Nov 19th, WBC 2.9, HGB 11.7, HCT 35.4, PLT 269, ANC 1400.  Since his counts were good we had a great Thanksgiving with lots of cousins!

 Slurping his Icee & playing DS on our way to PCMC for his clinic appt today...He played Madagascar on the playstation again just like last time, and just like last time didn't want to leave when we were all done. He just got a CBC and Vincristine today.  I didn't take any pics this time, it is so routine it seems like I take the same pics every time, throwing coins in the fountain and playing video games.

 We went to ICS for a few after his appt to visit another Idaho Fighter who is inpatient right now. It was fun to visit for a few minutes even though Tyson kept whispering in my ear "can we go now?"  He didn't like being there very much. 

We also got to see one of our favorite ICS nurses Kathy.  Ty had her at diagnosis and when he was 'in' for his fungus.  My oldest knows her from camp Hobe and calls her 'Eisenhowa' cause she has an awesome accent.
His counts today surprised us a little because he was doing so well: WBC 2.2, HCT 33.4, PLT 259, ANC 600!  So they lowered his dose of 6mp (oral chemo) from 1/2 pill 7 days a week to 1/2 pill 4 days a week but kept him on his one pill of methotrexate a week. 

His rash hasn't been as bad lately and since he starts steroids today for his 5 day stint he shouldn't have a rash for a few days.  I was right, his doc said steroids are great for rashes so that's why it cleared up last month.  See the brown on his front teeth? Those are calcifications I think they are called, he bumped them when they were growing in and it caused brown thingys.  I took this right before we went into the dentist to have the big one fixed along with a chipped filling.  He got a pokie prize.
We've had a couple of coughers in the house lately so hopefully we can keep the germs at bay while Ty's counts go up a little hopefully... now that he will be on a little less chemo. 
Thanks for dinner!  It is so nice, (especially when we have these appointments later in the day so he can still go to preschool), that I don't have to worry about what my kids are going to have for dinner.  They love chicken noodle soup!
 Thanks for checking in!  Life gets a little more normal each day and I get a little less crazy...hmmmm that might be why some germs made their way into our house though, maybe I need to go germ freak again.
Oops...I forgot to put his height and weight... 99cm!!  he is growing!!  and 17.7kg which is almost 39 lbs!!

CBC

Ty is having fun with the snow, he built a snowman all by himself the other day...

One good thing about not growing much..he gets to wear the same snowsuit he had last year.

 His week of steroids went pretty well this time.  I was worried about preschool but he seemed to do fine and still enjoyed it.  He didn't want to go to tumbling on Halloween and when we got there he was pretty upset that he was in a costume (it was a costume party).  Steroids seem to enhance every emotion and it also makes him very particular about the way things need to be or should be.  If they aren't that way it is upsetting and hard to process and handle.  They also make him feel kind of crummy.  I convinced him to go with the promise of a silly string prize when he was done and once he was out there he had a lot of fun.   He had a great time at the neighborhood trunk-or-treat at the park, and we even trick-or-treated at a few houses after.  His methotrexate rash (around his mouth) completely cleared up, that must have something to do with steroids cause he still had his pill that week, but the rash didn't come. 

 See no rash!  His eyes always look more sunken when he is on steroids.... and now that he's not on his steroids, sure enough a day after he took his methotrexate pill his rash started to come back...

 It doesn't bother him though so I guess if that's going to be his side effect from his methotrexate pill we'll take it.  It is waaaaay better than most other chemo side effects.  It took me a few tries to get a good shot of his rash...

 

We did a CBC yesterday to see where his counts are since they doubled his 6mp pill dose a couple of weeks ago.  He was a little nervous about his port again, but he did great.  Didn't feel a thing again so hopefully each time he will be less and less nervous about it.  Of course it helped that his home health nurse is awesome.  He's done so well lately that we haven't seen her in a while.  His counts looked great, his ANC is back down close to where it should be so things are looking good. Hopefully it will stay that way, he stays on same doses for now.
We'll do another CBC next week just to make sure he's good to hang with family for Thanksgiving.
 Counts: WBC 3.5, HGB 11.9, HCT 36, PLTS 353, ANC 1400 
Thanks for checking in, good news is boring, but we are having so much fun being boring!

Preschool & Clinic today...higher chemo dose

 First things first...it has been so long since I updated I just have to add that Ty is loving his tumbling class...

 The mini maze at Swore farms...it makes me remember what it was like this time last year...


October 2011, one year ago.  He was in the middle of his most

intense phase of chemo...what a difference! Oct 2012

   Ty got to wear his Halloween costume to preschool this morning!  He LOVES preschool!

 And we took him straight from preschool to his 2:30 clinic appt. at PCMC

 We always stop to throw coins in the fountains out front.  He was very quiet and nervous because this is his first port access on his new port.  It has been several months so he was worried about it.  He kept asking me if 'magic stickers' have pokies in them.  I told him they did but since we put cream on it doesn't hurt.  He was still really nervous.

 He didn't even flinch when she accessed his port.  It didn't hurt at all.  Yay!  His nurse is sooooo good at it, she just pops it right in so he never sees the needle.  And dad had him sufficiently distracted with video games.  Hopefully he won't be so nervous from now on.

 Getting his vincristine...he doesn't care as long as he can play...the visit was so short today that he had to stay a few minutes and play a little more playstation.

 And Batman had to go visit Spiderman of course...and Superman...

His counts shocked us today, they are so high that they doubled his dose of 6mp (the chemo pills he takes) to bring his counts back down to where they want them to be.  They want his ANC to be around 1000 and right now it is 4600!  ANC range for a normal person would be anywhere between 1500 and 8000.  They try to keep his suppressed a little to keep the Leukemia from relapsing.  He was at 25% of the normal dose which is 1/2 pill every other day.  Now he will be at 50% dose which is 1/2 pill every day which means EVERY night is a 6mp night.  He always asks if it is a 6mp night because he knows he can't eat 2 hours before or 1 hour after he takes it (I think that's how it goes) and he can't have ice cream, milk, or orange juice that night.  When we told him it is 6mp night every night now he just said 'okay'.  His maturity surprises me sometimes. 

His oncologist didn't raise his Thursday night pill.  We didn't talk to her after, but I'm guessing that is because just taking his one tiny pill of methotrexate (which is 10% of his original dose) is giving him a rash around his mouth and he even got a couple of small mouth sores from it a couple of weeks ago.  I'm glad they didn't raise that. Here is what his rash looks like:

It is worse on the weekend, Saturday and Sunday and then fades a little bit..but it seems to be a little worse the last couple of weeks.  It doesn't itch or bother him though.
 Hopefully the increase of 6mp will do the trick without crashing his counts.  He will have a CBC in a couple of weeks to make sure it isn't making his counts go too low. 

He also starts his 5 day stint of steroids today.  Boooo

Thank you for dinner!  I'm amazed that people are still bringing us dinner over a year and 1/2 into this!  We got home after dinnertime tonight so it was great that my kids got dinner and we didn't have to worry about it one bit!

He gained some weight!  17.6kg which is 38.7 lbs!  He really is eating pretty good, his favorites right now are german pancakes and PBJ sandwiches.  I'm sure his week of steroids had something to do with his weight gain too.  Counts for my records: WBC 6.7, RBC 3.89, HCT 34.4, PLTS 251, ANC 4.6

Recovery from surgery, Steroids

It's funny to say recovery from surgery!  It's like he didn't even have surgery.  His port insertion site doesn't hurt unless he bumps it and today he's doing flips on the tramp and out playing with friends.  I do already see the effects of the steroids however.   He hasn't had to take them since April because of his fungal infection (fungus like steroids).  Normally he should take them for five days every time he gets vincristine which is once a month.  The steroids and the vincristine work together to keep the Leukemia away.  When he takes them he gets extra hungry, easily agitated, and his eyes look sunken with dark circles around them.  Luckily all of that wears off fast cause he only has to take them for five days.  Normally, because of the chemo he takes at night, he isn't hungry in the morning, but with steroids in him he wants to eat as soon as he wakes up

 He even took this one with him when we took the girls to school.  Today he has had a bowl of lucky charms, some spaghetti, pudding, and 3 whole pb&j sandwiches.  He is still in a pretty good mood so far though...whew!

 Ty had to miss preschool Tuesday to go to PCMC so while he was gone his class made him a very cute get well poster!  He loves it!  Thank you so much Miss Shelley!

Surgery, Chemo, and CureSearch Walk

Idaho Fighters Team!!!  I probably have a couple hundred pics from the CureSearch walk...this one is my favoritest.  It makes me cry.  Thank you so much for coming, I hope the walk was as meaningful for you as it was for me!  The next pic makes me cry too...

 Each family that was there who has lost a child to cancer let go of a white balloon

 Then each kid who is fighting or has fought cancer got to go on stage and get a medal...you can play where's Tydo if you want

 I'm not sure how he got lucky enough to hold the banner.  The sun was bright, he didn't look up very often.

Each walker got a bandana (well, until they ran out that is...sorry to my team members that didn't get one!)  The dark green ones signify people walking for a cancer fighter off treatment, the medium green ones like the one Ty has on his head signify walking for a cancer fighter on treatment, and the very light green ones are for people walking in memory of a cancer fighter they lost.

 Then after they got all got medals the cancer kids started the walk for us...see Ty peeking over the banner?

And a fellow A.L.L. fighter lifted him up for a picture, so sweet!

And there they go!  My short little buddy peeking over again.  The walk itself was about 2 miles around the park and since there were over 3000 people walking, it was quite a sight!

Not sure if you can even see us in this one...I think we are wayyyyy back behind those trees.

But here we are! Go Idaho Fighters!!!

 Each cancer fighter had a poster with pictures and their story

 There were so many people there it was very chaotic!

 But it was fun chaos!!

 Ty even had enough energy at the end to run up the hill a few times and roll down

The CureSearch walk was organized and put on by a group of volunteer Utah moms of cancer fighters.  I have met most of these ladies and they are awesome!!! 
We are so thankful we got to be a part of the walk!!

Last but not least...here are a couple of my cousins who shaved their heads last October in honor of Ty for St. Baldricks.  They are some of my heros!  To read that story click HERE.

I wonder if there is a limit to the number of things you can put in one post...so much has happened lately.  Today Ty got his new power port...

 Checking in bright and early at same-day-surgery at 8am...which means we were up at 4:30 to get here on time.  I drove since Brady got home from working in Boise at 2am.  Two hours of sleep might count as drowsy driving.

 97.9cm!!  I'm sure that wall thing isn't always totally accurate, but it looks like he is growing.  His weight was 16.8kg, which is just a tiny bit less than it was last month.

Then up to oncology clinic for his exam, blood draw, and vincristine... Pokie prize!!  He's been waiting and waiting to open these gel pens.

 And a little more gaming of course while we wait for blood count results and stuff.  His counts were great!!  His ANC was 1000 which means they don't raise the dosage of anything...yay!  WBC 2.8, RBC 4.13, HCT 36.9, PLTS 244

And now back down to surgery...we got a little creative while we waited...gel pens are much more fun way up high 

 Still waiting...catching bubbles...

 Still waiting...zooming the car behind the sink foot pedals

 Then the surgeon came in to explain the surgery and show where the new one would be.  The line on the right is the line where he will cut to insert the new port...the pink line on the left is his old port scar...and of course he had to add a nose and a smile.  He was wondering on the way out what the nurses were going to think about the extra lines he drew. : )

 Surgery took about an hour and went well.  His nose was super itchy as he woke up.  This was the first time Brady was there when we handed our little buddy over to the anesthesiologist and said bye. (Fourth time I've done it)  Now he knows why I was bawling my head off when he called me during Ty's surgery to get his old port out.

 Ty wasn't really in the mood to wake up for a while

On the way home he was hot and red faced...but that went away after about an hour.  He had a little nap on the way home too, and had some lucky charms and sprite.

 And if you saw him tonight playing with the neighbors you would never know he had surgery today!  My tough little buddy!

 I know right!  Who rides their bike the same day they had surgery?...don't worry, it still has the training wheels on

Showing his friends his new port...see all the yellow?  They used enough Iodine to clean the State of Utah, he's got it from his belly button to his ear...literally  His port sticks wayyy out, it will be interesting to see how that goes.  Hopefully he will be used to it soon, he hasn't complained about it yet so maybe he is already used to it.  I am glad this day is over!  I have been dreading it for months, and of course it wasn't as bad as I thought it would be. 

 Now here's to hoping for two years of an infection free port!!! 

When we got home the kids had already been fed dinner by my awesome visiting teacher! 

 Thank You!!

And thank you for reading, caring, praying, helping us, being great neighbors and friends and family, donating to and coming to our CureSearch walk, and everything else!!