Caden Tommy

9 month post treatment scans....

2010-02-03T10:13:00.002-06:00

It's been forever since we've posted here, but just a quick note to let you all know that Caden had scans at 6 month post diagnosis with results that showed lymph nodes id the cancer bed to be swollen. I spoke with Dr. Coulter last month during labs and a port flush about what that meant, and he said it could be nothing, and it could be something. These scans should answer a few more questions. His labs last month were fine though, which is promising! So, keep your fingers and toes crossed on February 10, 2010 for NED and we'll keep you posted!

One year...

2009-11-30T22:28:00.001-06:00

December 1 is the anniversary of finding out about Caden's cancer. What a journey! So let's be joyful today and celebrate life!

New Beginnings...

2009-10-28T16:21:00.002-05:00

We had a recent reminder of last year at the end of the week last week. For the first time since Caden had been diagnosed with cancer, I was called from his school to mine to let me know he was running a pretty good fever. I called Children's and since Caden still has a port in, he has to go to the ER when he has a fever above a certain degree. We went, he was swabbed for H1N1 (I'd had it the week before but he was already being treated for it so that he wouldn't get it), had chest xrays done, labs done (which were clearly more traumatic for the hospital staff than it was for either of us) and he was swabbed for strep.

The results? Strep. An ironic diagnosis considering that's what he was diagnosed with three times before they found the cancer. It was a bad reminder of last year. However, the difference is that they actually tested him for strep this time, they did all of the labs and everything was fine with the exception of his white cell count. He was put on antibiotics and all is good...he's completely back to normal.

Starting next month, with the permission of the friend I sent these to, I will post emails I'd written about Caden and how we got to where we were. It is surreal to go back and see, but at the same time, I am happy we found it when we did. He continues to do fantastic.

As for me...things are good. We are in the middle of fall break from school. I've had a wonderful time and experience with some new things in my life, some reminders, some huge blessings. I'm feeling pretty positive in my world...

:o)

Nicha...

2009-09-23T18:15:00.003-05:00

Rest in peace...

ROSA ESPERANÇA

2009-09-06T19:29:00.003-05:00

An absolute must see...THIS is what I went to Portugal in May to see! These ladies deserve all the support in the world. TOTALLY worth going for!

(and FU YOUTUBE for deleting their soundtrack from the original version of this...grrrrr)

N E D ! ! ! ! ! ! !

2009-08-25T19:55:00.002-05:00

3 month post treatement scans were this morning and I am happy to report that Caden has NO EVIDENCE OF DISEASE!!!!

Dr. Coulter called and jokingly complained that I changed my ringback tone from hip hop to a boring ring...LOL... We're leaving Caden's port in for the next year, and because of that, we are back to monthly visits to Children's to flush the port until it is removed. Small price to pay to keep the kid fairly comfortable during these scans he will continue to have every three months.

Thanks everyone for your thoughts! And thanks also for the birthday wishes!!

Greetings from San Diego!

2009-08-05T22:07:00.006-05:00

Euphemisms.

2009-08-04T11:54:00.002-05:00

From the article The Unvarnished Reality of Autism By LISA BELKIN

It’s time to stop mincing words.

“Agitated?” Here’s what agitation looks like at my house. It’s nothing like the temper tantrums typically developing toddlers throw. It’s scary. Dangerous. Violent. And, until I learned to spot the signs, unpredictable. Even at five and highly verbal, when our son’s rage and frustration spin out of control he’ll lash out by hitting, biting, kicking and spitting. He’ll throw his toys, chairs, table and easel; run around breaking things; and become a threat to us and to himself. One especially terrible morning when he was 4, he threw a glass across the room, where it exploded against a wall. Then, all revved up and fascinated by the shards, he tried to run on them, barefoot. I barely grabbed him in time to avoid a trip to the emergency room.

We have learned what to do. My husband and I had to take parent training courses (another euphemism, if you ask me), where we were taught how to wrestle our smart, beautiful son, who can be incredibly funny, sweet and charming, into a restraining hold that resembles nothing more than a human straitjacket. His response is to head butt and bite. I’ve worn long sleeves on stifling summer days to hide the bruises along my arms. “Agitation” does not cause this.

And “irritable” does not begin to describe things, either. Anxiety is a key component of Asperger’s, and because our little boy’s brain works differently from most people’s, the world is a confusing and scary place for him. He can be playing so nicely with a child one minute, then hit or pinch them or scream in their face the next. He craves schedules and predictability, and the slightest change can set him off.

Noise “irritates” him too. He can do quite well in a calm quiet setting, but he will fall apart when there are too many people or other stimuli. To stave off the anxiety, he perseverates – repeating behaviors over and over again. Imagine trying to go on a quick errand with a child who, starting from toddlerhood, has worked through a repertoire of perseverations: wanting to touch every car, then every door, then every pay phone. Lately, he’s repeating a commercial catch phrase he’s heard on the radio ad infinitum.

“Crying.” The study talks of the crying. The word pales in the face of our son’s dissolutions into tears. These days, if he hears a simple “no” or learns of some change in plans, he might launch into a 10-minute jag, where he argues fiercely with us in between the sobs. Then he can quickly escalate to ear-piercing screams lasting another 15 minutes or more. It’s a wonder none of our neighbors have misconstrued what they might have heard and called 911. The shrieking does subside, back into sobs, and that part is somehow harder to watch, reminding me how terrifying it must be to feel to be that out of control, especially when you’re a small, anxious child.

“Inappropriate speech?” Our son, an uncanny mimic of anything he hears anywhere, could swear like a sailor when he was three. “Not able to follow the rules?” His anxiety has turned him into a defiant little control freak who wants to set them himself, then make everyone else — including other kids, and even us — follow them. “Impulsivity?” He has stopped my heart several times by dashing across our (thankfully quiet) street, unresponsive to my screams. “Strong-willed?” Fine, you take him for an hour.

“Stress?” What all of the above collectively does to my husband and me can’t possibly be expressed by those six letters. Having a child who, at times, is unresponsive, lost in his own world. Struggling to get doctors to listen, so your son can get diagnosed and treated correctly. The search for an appropriate school. The arguments over medication — weighing benefits against the frightening side effects. My depressing weight gain, some 40 pounds or more (I eat as a way to cope.) The deep mourning for the loss of the child we thought we would have, watching longingly as other parents play with their “regular” kids.

There are stares and glares of a holier-than-thou world at large, as judgmental strangers, neighbors and, worst of all, family members have clearly labeled my “misbehaving” child a “bad” boy and me a terrible parent. (No, thank you, he doesn’t need “a good spanking.”)

There’s also the isolation. I’m a very social person and before my son developed his “bad reputation,” I worked hard to cultivate friends in the building. But then the play dates and birthday party invitations dried up. It’s a terrible thing to be ostracized. As much as I might understand why parents would want to steer clear of us, my son has been doing much better lately, and there have been long stretches when I’ve felt very lonely for both of us, and very bitter.

Going to the store or a restaurant usually involves some sort of disaster — I’ve had to chase him around and around the aisles of our fancy market after he snatched a candy bar, then drag him to the sidewalk for a time out — and our mess is on display for all to see. I have to deal with all this more often than my husband; I’m pretty much past the point of caring, but he still worries a lot about what people think.

I was never a yeller, so I’m not proud of myself when I lose it. I know I’m supposed to be the in-control adult and my son’s role model. I know I’m more effective when I’m calm but forceful and that yelling only makes him worse. But he pushes long and hard. These days when I rage, he’ll sometimes ask, “Mommy, why are you so angry?” That makes me feel truly terrible.

And there is the toll on our marriage. I brought in a healthy paycheck for many years but as I’ve become my son’s caregiver, my career has been put on the backburner. This has thrust my husband into the stressful, unexpected role of breadwinner. For the first time, we fight about money. We have been at odds over our son’s issues and, given our different parenting styles, how best to deal with them. And he takes so much of my time and energy, there’s not much left over for me, let alone my husband. Somehow, we’re hanging in there, through the unimaginably worst of times.

So don’t throw your euphemisms my way. Recognize that life with my son’s Asperger’s — life anywhere on the autism spectrum — can be at least a periodic nightmare, and respect my struggle enough to allow me to call it that. Know that not everything is bad — I am blessed with many moments of joy with our often adorable and cuddly boy. We share jokes and laugh together; we play and sing and dance; he holds my hand as I sing him to sleep each night, kisses me back and tells me, “I love you, Mommy.”

Those are the times that keep my going, but also break my heart — to see what he can be, and to think his volatile autism could hold him back, could ruin everything. Because to pretend otherwise, to sugarcoat with euphemism, does not make it go away. And it doesn’t help me to help him.

Post treatment check up, delay on deportation and CALIFORNIA!

2009-07-27T14:52:00.004-05:00

Back to Omaha! Haven't been there in a month which has been really nice! Caden managed to gain about 5 lbs in the last month AND he grew a couple of inches. LOL The nurse doing the measurements kept asking if that was even possible. With Caden, anything is possible! Dr. Coulter has shaved his head...not sure what that was all about but I commented on how Caden grew all of his back while Dr. Coulter lost his! LOL The usual blood draw was done and the wait was on. They also want a urine sample from Caden which is always tricky.

While we waiting on counts, Dr. Coulter and I chatted about Caden's port. I've been thinking for a while now that removing it probably isn't in Caden's best interests...at least not for now. Caden should be having ultrasounds done on his abdomen every three months but because he won't stay still for that, we decided what was best for Caden was to do the scans instead. This requires either the use of his port or doing and IV in his hand.

We've had some experience with this with Caden initially in the hospital when he was firt diagnosed, and even in retraints he was ripping the needle out of his arm with his teeth. Baaaaad memories. LOL When Dr. Coulter came to chat, the first thing he said to me was that he thinks we need to just make this easier on Caden for now and leave the port in. I never said a word to him about it! He just brought it up on his own. Amazing. So, Caden will have the port remain in his body until one year post treatment at which time the port will be removed. Then, we will "bite the bullet" and do the IV in his hand when scans are every 6 months at that point.

Caden's counts were EXCELLENT. Dr. Coulter came in and said rarely does he see counts like that. I imagine so. Yay Caden!

He will return to Omaha on August 25th for three month post treatment scans!

Now...for the best part...if you have your volume turned up, you can hear California Love! We're headed to CALIFORNIA!!! All of the arrangments have been made through Make a Wish and we'll leave this weekend. I've made arrangments for my house and dogs to be cared for while we are gone (thanks Nony friend!) and we're all set! Check back with us starting on Saturday...we'll post pictures of our journey and update daily!

Spray park fun!

2009-07-24T18:37:00.005-05:00

A little spray park fun on a great Friday! We were there with Nony cooling off because it was HOT today!

Let's learn the language...

2009-07-22T21:07:00.004-05:00

of the county in second place that visits this blog (with a minor exception...this is brazilian and not European)!!!

Calidornia and whata!

2009-07-20T12:52:00.003-05:00

Yes, you see that right! We refer to California around here as Calidornia. Why? Ha ah...that's actually a Crystal Chappell reference....the story behind that is simple. She tweeted one day about traveling to California and misspelled it as Calidornia. It then went on to take on a life of it's own....so of course we here carry on the name and refer to it tenderly as such.

Fortunately for us, we will travel there soon! The dates have not been confirmed yet with the Make a Wish Calidornia chapter yet, so I won't blog about dates, but we will have a small party with the make a wish granters on Wednesday, July 29th!

Caden will have his one month post treatment check up on Monday, July 27th with Dr. Coulter. They will also do something small for him there too for his end of treatment celebration. He's doing well, but for a while was limping rather frequently. He tripped twice prior to the limping, and then did the limping for at least a week after. We have to watch for things like this due to the Vincristine they gave him, as this could potentially be a side effect. Some kids eventually need leg braces to help correct the problem, but we're hoping this is just something that happened and is unrelated to the chemo.

He is showing some signs of regression in some areas. He's doing things he used to do but I thought he'd out grown. He also is changing words on us, which is frustrating for him and frustrating for us! LOL He completely changed his usual word for McDonald's from Doe Doe's to Whata. Jazzlyn and I both were pretty well banging our heads into the wall trying to figure out if the kid wanted water (calls water "dink" for drink) or walmart (he calls that Wa Wa), when it turns out, he was requesting McDonald's. *smacks head!*

More news next week!

Hell yeah...I've been Chappelled!!!

2009-07-18T19:11:00.004-05:00

Ok, so, I'm going to be pathetic here and boast about something that is potentially relatively minor to the rest of you all but to me, it is HUGE! One of my favorite actresses, Crystal Chappell (Guiding Light, plays Olivia Spencer) tweeted me today! If you follow me on facebook, you know that one of the questions I ask on a "how well do you know me" poll is which actress would I most like to meet...Crystal is the one. How freaking neat to get a message from her!!!!

@tosquinha not shallow at all. And, yes, she was.
23 minutes ago from TweetDeck in reply to tosquinha

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

100th Post!!! So we must celebrate it like this...

2009-07-14T19:24:00.003-05:00

a video of my daughter, her teacher, her husker connect wrestler and myself in May. Love to pick on this guy!

Hanging out at home...

2009-07-14T19:15:00.004-05:00

Yay for summer! Hanging out at home. See how nice Caden's hair has come back in?

Nony!

2009-07-09T21:06:00.002-05:00

Hope you and the fam accomplish lots in the next three weeks! I was gonna say have a great time and all of that stuff butt I know harvest isn't exactly the time to be having a grande ole time! So here's to hoping for very limited moments of being stuck in the mud! Hope everything goes as smoothly as it can.

See you in August my Nonified friend!

Hugs

My girl Sara...

2009-07-05T20:30:00.002-05:00

Ha ha ha...do you remember this??? It will be good to have you back this year!

My favorite Portuguesa!

2009-07-03T00:11:00.003-05:00

Week 1 Post Treatment!

2009-07-01T18:44:00.002-05:00

Ha ha...no, I'm probably not going to keep up with how many weeks post treatment the child is, but it is soooo nice to be done with treatment! Next appointment will be the 27th of July.

We heard from Make a Wish today! It's official: we will be headed to San Diego! When? Yeah still don't know but it will be before school starts back up so there isn't any interference with school and work. I missed a lot last school year and so I am trying to avoid it when necessary for the coming one.

Caden is doing great overall. The other night, Nony was here and we were watching some videos of Caden from about 2 or 3 years ago. It's amazing to see how much progress he has made and yet he loses some things like counting almost clearly. When Caden says most words, he drops the endings of them now. Very strange. He understands a lot of things very well, and again has made some amazing progress just since December even.

Hope everyone is doing well!

Scan day. EDITED NED!!!!!!!

2009-06-26T07:45:00.004-05:00

*UPDATED*

NED NED NED NED NED NED NED NED!!! Everything came back as no evidence of disease! The only thing noted was that Caden has a large amount of stool in his colon (time for the miralax) so we'll see if the miralax can help with that.

Appointment again in ONE month!

Yiiipppppppeeeeeeeeeee!!!!

*************************************************

We're in Omaha, did the usual paper work and questions, visited with the nurses and doctors, and accessed the port. It was a little more difficult this morning with accessing the port and had to do a couple of tries. Caden was very unhappy and very inconsolable afterwards and was trying to take the needle out of his port until I suggested the roller coaster beads that he loves so much. He immediately calmed down. He was rolled off just a bit ago and will have 4 tests done. They are saying he'll be out of the room for about 2 hours. I'll keep you all posted.

********
Rest in peace Michael Jackson. Definitely a huge part of my childhood...was reminded of it at the beginning of June with a student who was wearing a single glove and trying to dance like Michael. Very unfortunate loss.

Scans...part 2!

2009-06-25T13:15:00.001-05:00

Ok so let's try this again! Caden will have scan in Omaha on Friday morning at 7:30 am/13h30 Lisboa time. Positive thoughts and prayers appreciated! We'll update as we know more information!

A typical conversation between Jen and Julie...

2009-06-24T21:42:00.004-05:00

No scans today.

2009-06-22T15:05:00.003-05:00

We arrived to Omaha at 6:00 am for scans, got checked in, answered some questions and so on, but the scanner went down right around the time we got there. They were not anticipating it to be ready until at least noon, and even then it wasn't for sure. We're rescheduled for Friday morning at the same time...so...looks like we will have news later in the week.

Check back then!

Thanks Sweetie!

2009-06-21T13:06:00.002-05:00

A biiiiig thank you (Obrigada!) to minha amiga Nela for lighting a candle today at Fatima for Caden! A yellow rose to you! That means a lot to me...Fatima is a special place...Kisses and hugs!

Caden will have his end of treatment scans tomorrow, Monday, at 7:30 a.m. central time/13h30 Lisboa time. He is scheduled to have counts done, a chest xray, abdominal ultrasound, and a heart study. We probably will not have results until late afternoon on Monday at the latest, but we'll keep you all updated!

(((Hugs)))

LOL

2009-06-20T20:34:00.002-05:00

Just having some fun out with the kids. And yes, it's Spanish and not Portuguese. Boo me.

Week 27!

2009-06-16T13:12:00.005-05:00

Caden has hair! YAY!!!

Monday was another Omaha day for counts. Just a quick visit...counts were great! Dr. Coulter came into the room to visit for a bit and to go over next weeks plans. Week 28 will be end of treatment scans. This means the end of weekly visits to Omaha for counts and now switching to once a month for the next three months. Here's to hoping week 28 scans are NED!!!!!

And a picture of Stanley for good measure. LOL

What Friendships Are

2009-06-14T13:05:00.004-05:00

Got this in an email and wanted to share! I much appreciate the friendships I have that are like this!

1) A real friend will be there in a pinch. If you need a favor in the middle of the night, they will help you out. They will be there when you need them no matter what.

2) True friends will make you smile. They will make you laugh and laugh with you. They won't laugh at you or make fun of you when you are not around.

3) Friends will keep your secrets. They won't blab your intimate details. They won't betray you. They will be the shoulder that you can lean on.

4) Honesty is an important quality. A real friend won't let you go out in public looking like a clown. They will tell you the truth about situations. They won't keep secrets from you that could be hurtful.

5) True friends won't stab you in the back. They will never talk bad about you. They will never say things behind your back that they wouldn't say to your face. They will not try to drag you down to make themselves feel better.

6) Friends are loyal. They will stand by you no matter what. They won't dessert you when you need them the most. They will harass you if they have to. They want nothing more than to be your friend.

7) Friends are easy to talk to. They will communicate with you when you have a problem. You will be able to talk to them about everything and nothing and always walk away feeling refreshed.

8) You share common interests, but don't try to steal each other's thunder. A real friend is someone that is willing to share the limelight. A friend will be willing to learn or try new things and not always be putting down the hobbies you enjoy.

9) Friends will be understanding and encouraging. They will try to walk a mile in your shoes and know how it feels. They will help you get through things the best way they can.

10) They will love and care about you no matter what. A real friend will see no boundaries. They will know no limits. They will be there for you until the end of time. A real friend never leaves. They never let anything keep them from you.

Nony...hey...don't EVER let me go out into public looking like a clown! Ha ha...that one was great...!

Week 26

2009-06-09T21:24:00.002-05:00

Just counts this week! We went up on Monday and the results came back to us in about 15 minutes after going back to the room. Everything looks great! Next week back up for counts, week 28 will be scans and according to the treatment regimen, that will be the end of treatment. Of course we considered it the end of treatment at the end of chemo, but 28 weeks is the real end. Then what, do we count months? LOL We'll have to do something like month one: post treatment or p.t. or something catchy...

Summer vacation began for the kids last Friday and for me on Monday! I won't return to work until the second week of August and the kids about a week after that. So even after treatment ends, come back and see us because we'll still be here updating and carrying on for many years to come.

The kids want to go swimming, see $3 movies at the Grand, go bowling, and other things along those lines, so it will be a busy summer. At some point, we are intending to take the Make a Wish trip...we are thinking that it will be San Diego, but we are not sure about dates or anything like that just yet. The older two will also go to a couple of vacation bible school activities this summer. One at a place they went last year and really liked, and another that a therapist intern at my job will be helping.

I intend to hit the gym this summer, help my friend Julie with her new classroom getting it ready for the new school year, and some other things as well. Yay summer!!!!!

:o)

Cancer Survivors Day: A Celebration of Life!

2009-06-07T17:07:00.002-05:00

This is Caden's first cancer survivors day. Very, very best wishes to all my survivor friends in the USA and in Portugal!!!

Week 25 video and news!

2009-06-01T15:31:00.009-05:00

Caden received his very last dose of chemo today! Everyone was excited with seeing this end. Dr. Coulter said Caden looks fantastic...as you can see from the video above, the child is definitely growing his hair back. He's been in an especially goofy mood lately and today was no exception (Dr. Coulter was too, ha ha ha ha). The great thing about this doctor is that he answers my questions without me ever having to ask them. I wanted to ask about the port removal, how long Caden has to be on an antibiotic, and a couple of other things but I never needed to ask!

The future goes like this: Caden will have blood draws the next two weeks like he normally would. We were thinking maybe we could just do them in Lincoln, but I am not sure about how a lab would handle having to restrain Caden with my assistance so I am thinking we just need to continue to go to Omaha for this. The third week of June, Caden will receive scans and a heart study if I remember correctly. After that, we continue to see Dr. Coulter every month for the next three months. There will be more scans scheduled then, and if NED visits us again, Caden will come off of the antibiotics and he will have his port removed! Yay!!! Then he will see Dr. Coulter every three months for a year, then every 6 months and so on for the next 5 years. So while in reality this is over, it's really not. The child will be 11 years old when he is considered cancer free in five years and WOW what a concept that is!!! In the meantime, it is time to find Caden a new pediatrician. I didn't want to continue to have Caden see the same GP as before for two reasons: I think that it would benefit Caden greatly to have a doctor who understands autism and the second reason is, while I don't hold it against the GP who missed the tumor, I am not real willing to go back to someone who didn't take seriously my concern the first three times when I insisted it wasn't strep throat. Caden saw a doctor for behaviors for a while who sees a lot of autistic children in his practice and has an autistic child of his own, who happens to be a pediatrician...so...we'll see if we can't get the child transferred there.

Dr. Coulter did mention that while now is a good time to find a new doctor, whomever Caden sees will have to speak with him about future immunizations. I should have asked why...if this was a kidney thing, or if there was some relation to immunizations and this cancer.

And as you are aware, there's been plenty of debate about immunizations and autism, so immunizations and wilms tumors have me wondering. I do think Caden inherited the autism, but there has been absolutely no history of pediatric cancer in either family so far as I know, and one incidence of cancer (breast cancer) in an older cousin on my mother's side of the family...but beyond that, no cancer since my paternal great grandfather and Caden's father's paternal grandmother.

Enjoy the video! And by the way, how cool is it that the country of Portugal is smaller than the state of Nebraska and yet there are over 1010 visits to this blog from Portugal and over 1500 from the entire country of the USA??? Portugal, you rock and you know my heart is there with you! Beijinhos to my Portuguese friends!

This is it! The final day!

2009-05-31T18:41:00.000-05:00

We'll celebrate today the end of treatment for Caden. We will not have an update until later on Monday, but we will update! Say it with me: WOOOOOOOOHOOOOOOOOOOO!!!

Happy 6th Birthday Bug!!!!

2009-05-30T00:59:00.002-05:00

Happy weekend! Have a laugh with Otalia...

2009-05-29T19:26:00.000-05:00

These two crack me up!

Time to get the party started! Week 24!

2009-05-26T19:58:00.000-05:00

Week 24 in Omaha for a count check and they were good! It's amazing to me how strong this kid is and how far he has come with this! So the countdown continues! Next Monday will be end of treatment and the party has started! Caden will also celebrate his 6th birthday on Saturday and school gets out for the summer on June 4th! Lots of reasons to celebrate!

Pictures of the kids from the weekend

2009-05-25T10:18:00.000-05:00

...

2009-05-22T21:55:00.001-05:00

Exactamente.

2009-05-21T19:15:00.000-05:00

Click the picture to take you to a link of a video.

Those of you from the USA, this is what I went to see in Portugal. For those of you from Portugal, you've more than likely already camped out in front of your tv sets and viewed this as it was on. For me...I saw it much later than you, but the fact that we can SEE it is amazing!

The ladies in the performance...all of you...you are all incredibly beautiful women. To see a recording of parts of your performance on this newscast was just as powerful to me than it was seeing it in person. I am so proud of all of you and so proud to have even shared a little space with you.

Nela, your Goddaughter said you looked "heavenly" during your interview on tv! I agree with her, and your eyes had that "look"...

Did I understand any of it? Yes, a little. Especially this one word: Exactamente.

Exactly.

Kisses to you all

Week 23

2009-05-18T18:29:00.000-05:00

Easy day today! We went to Omaha, did labs and Caden's counts were good! Hemoglobin was at a 10, and platelets were looking good as well. We were out of there almost within an hour and that was one of the fastest days we've had in a while! Next week back for counts again, but it will be Tuesday, so look for us then!

We arrived back to Lincoln and applied for a transfer permit for Caden to attend a different elementary next year. He will follow his sped teacher who recently was offered and accepted a job at this school. Congrats to her! We stick with what we trust and know well, sooooo...he will begin first grade in a new school. My other two children will continue at the school they are in. I met the principal of the new school today and had a nice conversation. By afternoon, the permit was approved!

And YAY! School is almost out for the summer!!!

Week 22 and Caden is NED!!

2009-05-12T18:28:00.001-05:00

After a delay of a day, we went to Omaha first thing this morning for week 22 scans and chemo following. Caden did well during the scans, it is my understanding that he did not need general but just sedation. That's huge! We were in and out of the CARES unit in about three hours and went up to the Oncology clinic for chemo.

Caden's counts were completely perfect. Dr. Coulter examined Caden and began to schedule the next set of scans which will occur in about 6 weeks. Always good to be prepared! LOL Caden received his last dose of doxorubicyn as well as his second to last dose of vincristine. This leaves ONE more treatment! What a journey...

Dr. Coulter asked me how I was doing with all of this. He said that parents freak out at two times during this process...at the beginning, and at the end. I understand this. It's like we have a security blanket during the treatment process and so we don't worry so much about reoccurences, but then once treatment is done, we feel like the run has been pulled out from underneath of us and all of the sudden...we worry. Right now though, I refuse to go there. One day at a time...

We returned back to Lincoln and in the afternoon Dr. Coulter called with the results. Caden is NED!!!!!!

We'll go back to Omaha next week for a count check.

Saturday, May 16, join us at East High School for the student council's Make a Wish fundraiser! They will be sponsoring Caden!

Rosa, Esperança!!!!

2009-05-03T18:07:00.000-05:00

My name is Maluca. At least, that is what they called me all weekend... ;o)

Two months of preparation paid off and a great big THANK YOU to those of you in Lincoln who knew my plans and did not mention a thing about it here on the blog! It was...unbelievable. Without a doubt unbelievable...

"What the hell is this?" Ah, the words of my extremely stunned...and stunning...friend. Ladies and gentlemen, I could have never imagined her reaction. I knew she'd be surprised...we waited for either fainting or a heart attack (well, yes, we hoped for fainting above the damn heart attack!). But what happened was far more interesting! I arrived to Lisbon Friday morning and was picked up at the airport by Mimas and Leonor. We were to have lunch with Nela at half past 12. We arrived in the parking lot of the Park of the Nations (google it, you won't regret it) and we were already trying to hide me...behind my camera bag, behind people, because we knew she was around! Somewhere! We met Paulo and hugs and kisses were exchanged. He told Mimas and I to stand behind...something...whatever that thing was...a wall? I don't remember. My heart was pounding out of my chest and could be heard from Lisbon to Lincoln to San Diego. Yes. Yes it could. The "plan" was the Nela was meeting Mimas for lunch. Mimas had told Nela that she has something for her for the last performance that she needed to have. Paulo tells us he is going to walk up the sidewalk and to the other side of some small trees and that when we see him getting closer, to come over to where he was meeting Nela. We were watching Paulo walk and there she was! Nela, walking toward him. Paulo points up to Mimas and Nela looks. She looks at me. No reaction. She looks at Mimas and smiles. Looks back at me like I am just another person at the Park of the Nations...looks back at Mimas and Mimas points to me...Nela looks again and there it was people...she stopped dead in her tracks, staring, not sure if she is in any kind of reality or if she and I were the only people standing in the universe at that point in time. I step down from whatever ledge I am on, walk closer to her and give her a big hug! She is literally shocked. She doesn't say anything other than, "What is this? What the hell is this??". I tell her that there was just no way I could ever not come and be with her doing this last performance and that I was going to keep holding on to her because I was afraid she was going to faint...

We had lunch and later that evening dinner with Nela's mother. Saturday we went to Alçobaca (yeap...google that too and you'll find an interesting story!) to have lunch at Manuela's (a very lovely and so friendly woman!) and prior to that we'd visited the monestary there. We were there before, but no one took pictures due to camera issues, so this time we took plenty between Paulo and I! I must admit, I feel something very special in that place. I say this a lot in relation to places in Portugal but there were places in the building that we didn't visit on this trip that we had before...for instance the upstairs quarters where the monks slept and the courtyard that I swore up and down that someone must have shown me a video of before or pictures because it looked eerily familiar to me. After lunch, we went to rehersal at the theatre and let me tell you, I was already crying. I reconized, without really knowing the story behind the performances, Nela's story of the day she found out she had breast cancer.

Also, this is when the rest of the blog ladies learned that I was in Portugal. When they arrived, I walked up on stage after having seen both Alda and CrisJ walking across it, and Nela and Paulo directed the attention of the ladies to me, doing something similar as Nela had done...looking at me and looking away and then realizing who I am...it was Alda who called out my name first: "Jen! Jen!". CrisJ looked completely puzzled with this! LOL!!! I am not sure if it was because I was there, in person, or if it was that Mimas had kept this secret from her. By the way CrisJ, I asked Mimas to not tell you. Better for the surprise! And it worked! CrisJ stood next to me for a long time with her hand on my arm or hugging me and even though we speak two different languages, everything that needed to be said was said in those gestures. I will never, ever forget it! Cinda...Cinda is a ball of fire and I am certain that given the right circumstances, we could be good friends. Carla had a big, big smile on her face and offered kisses to the cheek. Cris VIN...I absolutely love your demeanor. And you were in on this too...to the rest of you...remember a couple months back a comment from someone saying that we share a friend and that we share a secret? She knew about this surprise as well (as did Manuela, who got the performance ticket for me!). At the end of the rehersal, Rui Germano, who I would say was the director type person of the performance, walked to the end of the stage, on front of where I was seated and asked me, "It is ok?"! LOL!!! It was waaaaaay more than just OK!!!

But the real, strong emotion came later that evening with the performance. It was in Portuguese, of course, but prior to the performance, Manuela sat with me and went through the script, translating each story. I was able to play back the scenes I had witnessed during the rehersal to keep up with the translation. But then it began...the stories of each of these ladies...and Cinda soooo powerful yelling in the mirror that she will beat this beast! I cried when the pictures of each of you were displayed and then the pictures of our three ladies who passed away from breast cancer. The ending was fanstastic...but oh...wait...I got pulled up on stage!!

My head gets a little fuzzy at that point because all I really remember was walking from my seat to where Lina Querubim was standing (I had been told prior to the performance that when it was time for her to go up on stage, that I was to go with her, but that this too would be a surprise, lololol), she grabbing my hand and I believe Gigi went up as well (again, my head is fuzzy with this!) as we accepted applause from the audience and danced and celebrated and what a magical time that was!!!

Afterward we went back to Manuela's where the flock of them all went to eat, drink and celebrate! When we were leaving, Nela and Paulo were approached by a woman who I believe was sitting near Lina at the performance and they chatted a few minutes. This woman, whose name I do not know, gave to Nela a medallion blessed at Fátima (which is also another very special place to me) for my son Caden, whom all of these ladies asked about. Nela then passed it on to me, tranlating what the woman had said and I was so happy...I don't even know of this woman and she knows about my son and his journey and offered something so special. Unbelievable. I attached the medallion to my necklace and wear it in my son's honor.

Sunday was departure day and departure day is always difficult. I have never done well with it...LOL... It's difficult to have this amount of distance from people we care so much about. Even if it is for just a year or two in between. It's difficult to have them in front of you, when we can finally deliver those hugs we've been wanting to give after the previous long and hard months, to be able to hear each other's voices and to see the smiles...it is difficult to go back to relationships had by email and occassional web cam chats and phone calls...I am not complaining. This is the way it must be. This is the way it has been for going on 5 years. We carry a special relationship at the distance we have, but when that distance is no longer an issue, it seems I'd rather not go back to having so many miles and an ocean between us...but we do. We hug and I cry, we exchange tender words and gestures, and I walk away from them once again to board a plane that I don't really want to be on. But that's the way it is.

I took something away from this though. I realized that even though I knew how many people in this world read and think and care about myself and Caden and this journey, I think that I never really could ever fathom the lengths to which that ultimately goes. I was going to Lisbon to support my friend and the blog ladies and the performance. But what really happened in addition to that was realizing more so than ever that the ocean between us does not keep us apart. It connects us. To hear the ladies, when they realized I was there, call my name out, was just astounding. To know there are people who are rooting my son on in his own journey in a country he has never been and that those people are emotionally invested and involved, touches me in ways I will never, ever be able to use words to express. Ever. I knew that I was going to Portugal to also gain some "Portuguese strength" as my big brother Paulo says, but did I REALLY know it?

I didn't, but I do now.

As for being crazy in making a weekend trip to surprise Nela and to see the performance...it was well worth it. And I knew it was going to be from the beginning. As someone said on Nela's blog about this whole thing, distance does not matter when you love someone. You, my friend, are so worth all of this.

This was week 21. Week 21 mine and your week. There was an appointment but the appointment did not need to be kept. As Caden had excellent counts and despite his strange fever last week, and because he has chemo next week, this appointment was dropped upon agreement between myself and the clinic. Until next week!

Week 20!

2009-04-27T22:02:00.000-05:00

Today we had a later appointment in Omaha than usual due to a Husket ConNect banquet my daughter and I attended early this morning. She and her wrestler Rob Sanders were both given a trophy for their participation in the Husker Connect Program. It was exciting to see all of the athletes...especially football players there this morning and we also sat a table away from Tom Osborne. It was a nice way to start the week!

So then this afternoon we headed to Omaha for week 20. I picked Caden up from school as he went a half day today and he seemed warm but was totally fine otherwise. We arrived to Omaha, Caden played with some train tracks with one of the Child Life people and then we were called back to Caden's usual room for a blood draw. They accessed his port, took two vials of blood (always just in case he needs a transfusion...and they asked me if I thought he was going to need one...lol...I said no, because even though the boy has begun to pinch more, he still had good color in his lips), and then attempted to get his blood pressure. That's always fun. But we did manage to get it this time! Then the temperature...and wait...he has a fever!

What?!

See, we're used to this child beating the odds with this thing and having not been sick outside of a runny nose and cough through this process. First attempt and his temperature was 100. Second attempt about 30 minutes later showed 100.2 in one ear and 99.1 in the other. Dr. Coulter examined Caden and said he didn't really think Caden was sick because he looks fine and acts fine, not to mention those counts of his were perfect! So no admission to the hospital; Dr. Coulter said if push comes to shove he'd need an IV with an antibiotic but for right now, he really feels he is fine.

However, I am choosing to keep him home from school on Tuesday because this mom refuses to play games with even a fleeting fever, even at this stage.

Tonight, he's developed diarrhea, but the fever is non-existant at the moment. Let's hope whatever this is passes quickly and becomes nothing more!

In other news, he is growing hair back!!! And it's dark...

:o)

I see...

2009-04-27T13:53:00.001-05:00

That several people from Lincoln and Lisbon both are visiting today...just a quick update that we had a later appointment in Omaha today. Will post the real thing soon. However, Caden is running a 100 F temp...

Week 19

2009-04-20T21:08:00.000-05:00

This was a chemo week, leaving now only two remaining! Dr. Coulter was right on top of future scans today, scheduling them three weeks in advance. And making a comment he will be there...ha...do you read this blog Dr. Coulter? LOL

The great news is that Caden received the doxorubicin three weeks ago and has always needed a transfusion at some point after...however, not only did he not need a transfusion, his levels returned to completely normal on their own! That's great! It was a short appointment today, with Caden receiving vincristine and dactinomycin. He will have his next CT scan three weeks from today, under general anesethia (way to go team!).

In other news, Caden developed a wet cough similar to my other two children, however, he never developed the fever with it. Another good thing. Over the last couple of days, I have begun to experience a sore throat and scratchy voice, along with aches and pains...so let's hope it passes quickly.

Here is the newest member of the family! This is Stanley, our 6 month old Jack Russell/Rat Terrier mix puppy. We have two others: Emily Meerkat/Puckers, a 10 year old Rat Terrier/Chihuahua, and Rocky, a two year old Chihauhau. Stanley is definetely the more active one of the bunch and far more playful. My daughter discovered that Stanley loves to play fetch with sticks!

Week 18...

2009-04-13T19:25:00.000-05:00

Week 18 was pretty uneventful! No transfusion was needed! Last week his hemoglobin was aroun 10, this week around 9, so not showing any signs of recovery, but not low enough for a transfusion, which actually is a good thing! We'll see where it is next week and watch closely this week too. Next week will be a chemo week...two more after that...

Make a Wish will be visiting with us this week, and we're excited about this! We were also given the opportunity to have a session with a professional photographer, so all of that is in the works!

My daughter Jazzlyn came down with bronchitis over the weekend...nasty cough with a high fever. Because Caden is a cancer kid and has a good chance of catching whatever anyone else has, I was on top of that on day 2. I took her into the ER and her oxygen was around 94-95% with a high pulse and a very high fever. They did a chest xray and did a flu test for Caden's sake on Jazzlyn...it's funny...and yet a good thing...how quickly and seriously they take this with her because of him. The xray came back fine and the flu test negative. So they are treating her with antibiotics and a cough medicine with codeine. She's feeling much better! Here's to hoping Caden doesn't pick up any of this!

*Nony...song reminds me of your situation!

Her Time to Shine!

2009-04-08T21:47:00.001-05:00

Today, my daughter Jazzlyn and I attended a wrestling practice, a tour of the Devaney Center and dinner with her teacher Mr. Knopik and her Husker Connect Wrestler, Rob Sanders. We had a blast!

Dr. Don Coulter and Week 17...

2009-04-06T14:23:00.001-05:00

Nothing much to tell for week 17! Everything looks good...counts were good and unless Caden's behaviors become crazy in the next few days, we will return next Monday!

Dr. Coulter allowed me to take pictures of him examining Caden, and I of course promised to not make a poll out of it. Ha ha ha!!!!

I often wonder how many parents will google his name after meeting him at the hospital or in the clinic for the first time. Truth is, I did. I wanted to know his experience in this field as we all want to be comfortable with the our children receive during this crazy time. So I've decided to turn this post into not so much a brag, but my impressions of Dr. Coulter. From the beginning, Dr. Coulter's bedside manner was excellent. I was a very shocked and scared mother at the moment of meeting him late in the evening of December 1, 2008. He'd been one of the staff in the room Caden was going to be staying in when we'd arrived by ambulance to Children's Hospital in Omaha. First the surgeon spoke to me and that was distressing enough, but then Dr. Coulter sat down next to me and clearly said that right now, they didn't know what was going on, that the doctors in Lincoln thought Caden's tumor was a Wilms tumor, but that he and the surgeon wanted to have a closer look before saying for sure what they thought this was. He'd made it very clear that he hoped like hell we didn't need him, but that if we did, he was going to do whatever he possibly could for my child. Turns out, as we all know, we did need him, and here we are with just three more chemo sessions to go...

Dr. Coulter is familiar with autism and went out of his way to make things as comfortble as possible at the clinic to the point that now Caden will let Dr. Coulter examine him and Caden will even help him as you can see in the picture above! He also understands that Caden needs special treatment when it comes to certain scans and so for the most part, things have been fairly smooth...with the exception of last week, but...it's done and over and it's all good.

So if you are a parent whose child has been recently diagnosed and will be seen in the hemotology/oncology clinic and you are wondering if Dr. Coulter is the right doctor for your child, rest assured that your child is in good hands.

Autism parents' plea: Understand kids' meltdowns

2009-04-02T19:20:00.000-05:00

Totally agree with this article. Sometimes, the autism is easier to deal with than neurotypical adults who should know better than to be judgmental of something they don't understand...we lived this exact same horror in waiting rooms.
_____________________________________________________________

(CNN) -- Heather Moores and her 4-year-old son, Julian, sat in a waiting room at a pediatrician's office.

Alexandre Moores holds his 4-year-old son Julian, whose behavior elicits stares and comments.

Julian, who has autism, was goose-stepping and counting every coat hook on the wall aloud. He started roaring like a lion. Moores smiled at her son, then noticed the horrified looks on other people's faces.

"People do not understand," she said. "To them, as bizarre as his actions might look, for us, they're a blessing. For us, it means he's enjoying himself and happy. No one understands that. They just see an out-of-control child. They don't understand this is a good day, when there isn't screams upon screams."

On the second World Autism Awareness Day, the search for a cure continues, and major court decisions have helped sort out the theories connected to the mysterious developmental disorders. Public knowledge and acceptance of autism and the difficulties the families face may be growing, as some iReporters told CNN.

But that's little comfort to a parent whose child's behavior can range from quirky to violent.

Children with autism have unexplainable breakdowns -- their outbursts are often loud, aggressive and disturbing. Julian slams himself against the ground or wall while he screams, flailing his limbs. Julian's younger brother, Marcus, 3, squirms away from his parents and runs into the street to oncoming cars because he is fascinated by them. He also screams with such ferocity that his face turns purple and mucus bubbles from his nostrils. Their youngest brother, Aric, also has autism and just turned 1 year old.

Heather Moores remembers that the stares in the waiting room were full of contempt. Onlookers shook their head in disgust and glared, making her feel like the "world's worst mother." This happens every time they go out to the doctor's office, the barber shop or anywhere in public.

"You'll hear people talking, 'If it was my kid, he wouldn't behave like that. These parents don't know how to discipline their children. Why don't you shut that kid up?' said Alexandre Moores, Heather's husband. "It makes going out unpleasant. I don't know if you ever get used to it."

Autism spectrum disorders affect the ability to communicate and interact. Many with autism have repetitive movements like rocking or hand-flapping and become set in their daily routines. Anything unexpected -- even a sound -- can result in major meltdowns.

"The reason why toddlers have tantrums is they don't have verbal or cognitive skills yet," said Dr. Lisa Shulman, an associate clinical professor of pediatrics at the Albert Einstein College of Medicine in Bronx, New York. "They have no control to navigate difficult situations using their social and communication skills. That inability to communicate can set off such behaviors in toddlers."

Their odd behavior draws unwanted attention. Marcus walks on his tiptoes and amuses himself by dumping liquid from sippy cups and containers. Julian counts everything aloud, over and over again.

"People are always staring and because the children don't show any type of physical abnormality, like someone with Down syndrome would show; people kind of assume that you're a bad parent," said Alexandre Moores

When the staring and critical comments become too overwhelming, Julian's mother tells the onlookers that the children have autism.

"You're in a situation you have to explain your kids, because you can't take the looks," she said. "It gets really, really hard. No one seems to understand where you're coming from."

To prepare for outings, parents should bring a favorite toy or plan ahead to reduce waiting time. But don't avoid going out, Shulman said.

Parents should have a pat answer to say to a nasty face maker, she said. "It should be something they feel comfortable with, about this invisible disorder. 'This is what autism looks like. My child has disability.' They're not obliged to engage in conversation. Make a statement that's heard and move on."

Moores said the most helpful thing the public can do is withhold the judgmental looks and reassure the parent with a smile when they encounter a child having a public meltdown. Critical comments are "very, very painful and very depressing," she said.

"Please try to understand parents of special children are going through living hell 24 hours a day," she said. "Even if you are confused and you don't know what to do, give that parent a reassuring smile. That's the absolute best thing you could do."

It's a familiar experience for Laura Shumaker who remembered the scorn of strangers whenever her son had a public meltdown. Autism was not well-known when her son, Matthew, now 22, was growing up.

"When I look back, there are people who judged me," she said. "There were just as many that were compassionate, who could see I was trying my best."

Four years ago, she and her son were flying home to Northern California from Philadelphia, Pennsylvania. At the airport, Matthew learned they would be flying on US Airways instead of their usual United Airlines.

This greatly distressed Matthew, who started hyperventilating.

Shumaker walked to the U.S. Airway ticket counter as Matthew rocked behind her nervously, mumbling, "United is friendly. US Air is not."

Under her breath, Shumaker whispered to the ticketing agent that Matthew had autism. Then in a louder voice, she said, "We'd just like to trade these in for United tickets," and winked.

The agent paused for a moment, glanced at Matthew and said: "Oh! Well, don't worry, because US Air and United are the same now...really. We merged. We're the same airline now."

Strangers in line chimed in. "That's right," said a man standing behind them in line. "And the skies are still friendly."

Hearing those reassurances, Matthew stopped hyperventilating and began breathing normally. Before leaving for the US Airways gate, Shumaker hugged the ticketing agent in gratitude. Read Shumaker's iReport submission.

"So many children are diagnosed, there is an awareness now," she said.

But it's still difficult to explain to others, Shumaker said, when Matthew comments at the supermarket that a person standing in front of them at the check-out line is too fat to buy ice cream.

Week 16, Day 3: Third Time's a Charm!

2009-04-01T12:24:00.001-05:00

Three tries and finally we have success. What an eventful week! Caden left the tube in his port all night long without removing it! Monday we will return to Omaha for a CBC check since doxorubicin drops his counts. I believe we're scheduled with the same doctor we've had three times this week. Oh Dr. Coulter...where are you?!?

:o)

Week 16, Day 2: EKG and heart study PERFECT! Chemo: FAIL

2009-03-31T20:30:00.000-05:00

Ok, so, scans are done people! For now...we actually do have more coming up in the coming weeks but for now they are done. We arrived to Children's at a little before 9 am this morning and were taken back to the CARES unit right away. Caden's port was accessed and then the wait was on for the procedure. It was 4 hours from the time we got there to the time we left to go up to Oncology for chemo. Caden did pretty well before the procedure, but as always was irritated when he woke up after. He was not having another minute in that unit! So I dressed him and IV bag in toe, we went up to Oncology. There we waited another two hours for results...by now this is 6 hours total...

Long story short is there was no chemo today. The heart study was just fine I was told later, there are no issues with his heart, and now the orders are written for the chemo...but you guessed it...it will be day three in Omaha...

GRRRRR.

At least though we know everything is ok. I'm not looking forward to another trek to Omaha and having had this three day thing that usually would have never really been an issue...

His port was left accessed so this will be a big test for Caden. Since being in the hospital the first time with the sugery, he has not ripped any IV's or port accesses out...and he's really left it alone today too. This will make it easier and probably quicker for Wednesday.

Week 16, Day 1: FAIL (lol)

2009-03-30T20:12:00.000-05:00

So...start of week 16! This was a chemo day..."was" being the key word here...lol. So, no Dr. Coulter again today. It's been a while since we've seen him. Caden was to see a different oncologist today...one he's not seen before. We restrain him to access his port, draw blood and the wait is on. Then we're told we must go across the hall to cardiology for a EKG and so on because they need that and a scan of his heart before he can continue to receive the doxorubicin. Unfortunately, Caden doesn't sit well for anything and the end result was no EKG done, no other tests done, and a big fat reschedule...including chemo. So now we will go back up on Tuesday. How frustrating and what a waste of time and gas...

So, part two will come Tuesday.

Pages...

2009-03-29T23:02:00.001-05:00

4 U...

2009-03-26T22:30:00.000-05:00

This is a bit of an "inside" thing...but isn't he cuuuute...especially with my glasses on? LOL

Smile :) Yeah, that other thing is 4 U 2...another inside thing...listen...

True, true...

2009-03-26T11:42:00.001-05:00

For the time that I've been given
I am what I am

I'd rather hate you
For everything you are
Than ever love you
For something you are not

I'd rather you hate me
For everything I am
Than have you love me
For something that I aint

Just because I don't think this should ever be deleted...

2009-03-24T17:06:00.000-05:00

I am going to post the guestbook entries for my grandmother before the guestbook expires.

________________________________________________________________________________
Alice J. Schaeffer (Bird) This Guest Book will remain online until 4/4/2009

March 05, 2009
Rest in peace Grandma. We love you and will miss you.
~
Jennifer Schaeffer,
Lincoln, Nebraska

March 05, 2009

Anton and family
Our thoughts and prayers are with you. LeRoy and Chad Riensche

~

Leroy Riensche,

Sterling, Nebraska

March 05, 2009

Take comfort in knowing that now you have a special guardian angel to watch over you.

~

Kim Davidson,

Waverly, Nebraska

|

March 05, 2009

I was named for a wonderful, loving person who will never be forgotten. Much love to you grandma, rest in peace.

~

Allison Schaeffer,

Omaha, Nebraska

|

March 05, 2009

To the family...

We are greatly sorry for your loss. Our thoughts and prayers and with you all.

Farah, Aaron, & Girls

~

Farah & Aaron Wilkason,

Lincoln, Nebraska

March 05, 2009

In loving memory of a wonderful person. We will love you and miss you always.

~

Jason & Amanda Schaeffer,

Lincoln

March 06, 2009

Tony and children
May the memories of laughter and love bring you peace now and always.And God's love guide you during this time of sorrow.
I am so grateful for the gift of seeing all of you during the visit in Sept.
Love and prayers,
Dolores ,Aunt Dolores

~

Dolores Fiechtner,

Lynnwood, Washington

March 06, 2009

Joyce , we were very sad to hear of the loss or your mother. Our thoughts and prayers are with you and your family at this time. We love you.

~

Dennis Evans,

Hockley, Texas

March 06, 2009

We want to offer our most sincere sympathy to all of the Schaeffer family, We know how much support of family and friends mean in this time of sadness. Take care. The Entire Almery Family

~

Darlene Almery/Neubauer,

Ceresco, Nebraska

|

March 06, 2009

We were so sad to hear that Alice had passed away and all that she had been through with the health problems. May she rest in peace and peace also be with the family during this hard time.

~

Chantelle & Teagan Thompson,

Topeka, Kansas

|

March 06, 2009

Our thoughts and prayers go out to you Tony and family at this time for your loss.

~

Brad Strauss,

Lincoln, Nebraska

|

March 07, 2009

Brian & Shelli,
Our family sends all of your family our deepest sympathy. After losing a father, (grandfather) this past October, we are more aware of how important the support of your friends, family and neighbors becomes. Take comfort in knowing that she is with our Lord, and watching over you all.

~

Randy & Kris Bower,

Ceresco, Nebraska

March 07, 2009

"The Weaver"
My life is but a weaving
between my Lord and me;
I cannot choose the colors
He worketh steadily.

Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.

Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.

The dark threads are as needful
In the Weaver's skillful hand,
As the threads of gold and silver
In the pattern He has planned.

He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with him.

I never met Alice, but I know people close to her and see how much she is loved. My thoughts and prayers go out to your entire family.

~

Julie Stanley,

Lincoln, Nebraska

March 06, 2009

Vonnie and the entire Schaeffer Family -
I was greatly saddened to hear of the loss of your mom - Know that my thoughts and prayers are with you all and always remember the good times but smile and laugh at the bad times too!! May she rest in peace.
God Bless you all.

~

Cristy (Schmit) Arent,

Lincoln, Nebraska

March 06, 2009

Tony and Family,
So sorry to to hear of your loss. Our prayers and thoughts will be with you and your family.

~

Dean and Scott Ziebarth,

Lincoln, Nebraska

March 06, 2009

Bob and Family-
I am sorry to hear of the loss of your mother. I have many fond memories of her from my high school days. Please take care and know you are in my thoughts and prayers.

~

Kim Williams (formerly Galloway),

Lincoln, Nebraska

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Week 15

2009-03-23T17:55:00.000-05:00

Just a blood draw week. Next week will be a chemo week...with the drug that he usually requires a transfusion a week after. Treatment ends at the end of June, but the reality folks is that after next weeks chemo, Caden only has THREE more! We didn't actually get to visit with Dr. Coulter today, though we did see him. We did visit with the social worker who asked us about doing a Make a Wish! Two weeks ago she sent us a referral form to fill out so the process was already started, but today she just explained the process a little more. We'll keep everyone posted as this goes on.

We get a lot of visitors in here every week! Most of you do not comment, but we'd like to tell you hello...so, hello to those of you who visit from Portugal...you are the second highest population in here! There are several visitors from Lincoln who come here...visits from the University of Nebraska-Lincoln, from LPS, visits from a place called Edward Rose Sons, we get a visitor from Minnesota, and another from China...I'm pretty sure I know who the UNL person is, as well as who the Minnesota and China visitors are--waving at all of you!

Week 14!

2009-03-16T20:31:00.000-05:00

For the first time since December, we have an event-free week from any cancer related issue! Y E S ! No trip to Omaha, no blood draws, no chemo...

So it was a regular day today...Caden went to school and I went to work. The weather is beautiful outside and today was generally a really good day! Next week we'll head back up to Omaha for a blood draw and count check. We'll also have spring break next week!!!!!!!!!!

Week 13

2009-03-10T20:31:00.000-05:00

Week 13 is a chemo week! Vincristine and Dactinomycin...Dr. Coulter was not in this week so we saw another doctor that we've seen about three times now. Nice lady. Good news is that his counts were excellent and that Caden will not need to go to Omaha at all next week and won't need a blood draw for counts until week 15! Oh what will we do with ourselves? LOL

Thanks everyone for you thoughts and condolences regarding my grandmother. It was a tough time last week.

A week of good news, and a week of loss...

2009-03-05T07:31:00.000-06:00

Rest in eternal peace, Grandma. You will be missed but loved forever...

Alice J. (Bird) Schaeffer

Alice J. (Bird) Schaeffer 71, Waverly, passed away 3/4/09 after a long battle with COPD and other complications. She was born June 9, 1937 in the small town of Brein, N.D. to Theodore and Pearl Bird. Alice married Anton Schaeffer in September of 1952 in Mandon, N.D. They moved their family to Nebraska in 1967. Alice worked outside the home after all her children were in school. She worked for Central States for 4 years and then went to Telex for 24 years. She was a dedicated wife, mother, grandmother and great grandmother.

She is preceded in death by her parents, Theodore and Pearl Bird. She is survived by her husband, Anton Schaeffer, Waverly; seven children and spouses: Jacqueline and Joe Basaldu, Fort Worth, Texas; Joyce and Roger Evans, Lincoln; Bruce and Peggy Schaeffer, Lincoln; Brian and Shelli Schaeffer, Ceresco; Valerie Schaeffer, Lincoln; Vonnie Schaeffer, Phoenix, Ariz.; Robert Schaeffer, Waverly; 19 grandchildren and 23 great grandchildren.

Mass of Christian Burial: 10 a.m. Saturday (3/7/09) at St. Patrick's Catholic Church, 6126 Morrill Ave. Rosary: 7 p.m. Friday (3/6/09) at Butherus, Maser & Love Funeral Home, 4040 A Street. Burial: Waverly Cemetery. Memorials to American Lung Association. Visitation after 5 p.m. Thursday at funeral home.

NED!!!

2009-03-03T17:34:00.000-06:00

Beautiful words...Dr. Coulter called this morning and said everything looks really well, nothing was seen on the chest xray nor on the CT scan!!! Yesssssssssssssssssssssssssssssssssssssssssss....

First sets of scans...week 12.

2009-03-01T20:55:00.000-06:00

This will be Caden's first sets of scans during treatment. He did not get the first set since Dr. Coulter did not want to put him through anything unnecessary. We will leave early in the morning to Omaha and Caden will get a CT scan and a look at his chest. We'll also have counts checked at the same time. Scanxiety has set in. We're hoping for his very first hello to N.E.D. (No Evidence of Disease)! We'll keep you all posted, though we may not have results until Tuesday. This is a chemo-free week; next week he will get chemo.

News from us soon...

Week 11!

2009-02-23T12:59:00.001-06:00

We ended last week in Omaha and started this week in Omaha again!!! Late last week, I brought Caden back up to Omaha to see about a rash on his legs and to check his counts. Monday of last week, he was at 8.5 for hemoglobin. Friday he was at 8.7!!! LOL Today though, he was low and so...a transfusion was needed.
Next Monday, we will start our day very early in Omaha for his first CT scan since finding the cancer. He was actually scheduled for an ultrasound, but we can't seem to get one while he is sedated (ha...anyone who knows Caden and has worked with him knows that there just is no getting him to sit still for anything), so Dr. Coulter ordered a CT scan instead and said that from here on out, he will probably require CT scans instead of ultrasounds since it is so difficult to get him to sit still.

Otherwise, this is a chemo-free week, which is funny, because we've been here for 4 hours now already, which is far longer than a usual chemo week!

Dr. Coulter has spoken...

2009-02-22T16:25:00.000-06:00

Drum roll please......!!!

He's...

36!

Wow, that was fun people! I sent the link of this blog to Dr. Coulter who had this to say:

"That is hilarious! My first reaction was 'Wow, 30 % of the people thought I was between 25 and 30...sweet!' Then I noticed that 7 % of the people thought I was older than 40...substantially less than sweet. However, the vast majority got it right, as I turned 36 in...[some month during the year](ha, protecting his privacy!!!)"

He went on to say that he'd never been the subject of an online survey, which we all know now is no longer true!

Thanks everyone for voting and thanks Dr. Coulter for such a great sense of humor!!!

After a fun discussion at work...

2009-02-19T22:02:00.000-06:00

I've decided to place a poll on Caden's blog. Yes, this is Dr. Coulter, Caden's oncologist. Some of you have seen his picture on here before when I introduced him to you several posts back. After an interesting discussion and counting all of the years it would have taken Dr. Coulter to get through pre-med, med school, internship, residency, fellowships...specialities...we all were wondering just what this man's age is. See, I have a guess, but I found that there was a nice little spectrum of guesses, and so...time to create the poll! Perhaps I can somehow convince Dr. Coulter to come on here and let us know his real age! Ha! Ok, so vote!!! (bigger picture below the poll so you can have a better look)

Online Surveys & Market Research

My close friends...

2009-02-18T21:36:00.000-06:00

"If you’re alone, I’ll be your shadow. If you want to cry, I’ll be your shoulder. If you want a hug, I’ll be your pillow. If you need to be happy, I’ll be your smile… But anytime you need a friend, I’ll just be me." --Author Unknown

To the women closest to my heart, I appreciate you and am so happy you are here!!!

Week 10

2009-02-16T11:53:00.001-06:00

Week 10 is under way. Caden's been in full meltdown mode the past 24 hours so we should have figured his counts were low...hemoglobin is at 8.5. Not necessarily low enough for a transfusion. Dr. Coulter has been excellent about understanding that Caden's behaviors esculate when his counts are low and is quite willing to see Caden at any point this week should we think his counts are low. He has a rule to not tranfuse above a certain number for hemoglobin, but knowns that Caden feels much better when he does finally get the transfusion, and is willing to do so should the behaviors get out of hand and his counts are low enough.

We now begin the phase where Caden doesn't get chemo every week, and we've been given the go ahead, after next week, to have his labs done in Lincoln!

Week 9

2009-02-09T13:25:00.000-06:00

Counts look good, and just vincristine again this week! Next week begins phase 4. Dr. Coulter has begun to talk about doing scans and tests. I know this is to be done before phase 5 which is week 13, so we are coming up on these tests. Next week Caden will receive a full dose of doxorubicin. This drug dropped Caden's counts the first time, and that dose was only half strength. So after next week we will have to watch Caden closely and be prepared to trek back up to Omaha for a transfusion if one is necessary. He did have a transfusion a couple of weeks ago after counts failing to rise after three weeks. And since Caden's behaviors seems to come out more then, we will be sure to not hesitate in getting him a transfusion.

Ah yes...Caden wanted to ride in this doll stroller, and I'm actually kind of surprised he got in it!!! :o)

Thanks everyone for your support and continuing to track us here on the blog! We appreciate it!!

Chemo #8

2009-02-03T21:39:00.000-06:00

Chemo week 8 went well. Caden walked in bubbly and giggly. Silly kid. Vincristine was the only drug he needed this week, no transfusion needed since he had one last week and was feeling much better. Doctor Coulter came in and Caden actually went to sit next to him and let Dr. Coulter examine him, AND gave him a high five on the way out. Dr. Coulter was amazed and said he felt special, lol!!!

Now, without the hair, people...as in strangers in public...are noticing Caden as a "sick kid". A woman came up to us tonight in the store very concerned, asking if he had cancer. She was very sympathetic and the reality seemed to sadden her. She asked how he was doing, what his prognosis is, and asked to touch him. She put her hand on his head which he tolerated, she asked him how he was and he pushed her away. LOL. So I explained he is autistic, that he probably understands what she is saying but isn't probably going to answer her. But you know what...it was nice aside from the usual stares we get in public because of my almost 6 year old babbling and carrying on (which I've learned to ignore). She seemed to be a very nice lady.

Bye bye, hair...

2009-02-01T22:21:00.000-06:00

This week we saw the hair go...lol...it started in the back with some balding spots, then on the side, then a small spot on top of Caden's head. Today I shaved the remainder off with the electric hair clippers without the guard. Tomorrow is week 8 for chemo!

Saturday Fun at Minden and Kearney, NE

2009-02-01T08:43:00.000-06:00

Back to the beginning Part 2

2009-01-29T19:52:00.000-06:00

Mon, Dec 1, 2008 at 10:03 AM

Email to me from Nela:

Can you ask them to do some tests and exams? Tell them very strongly that he is an autistic kid and that you feel that something is wrong. And if you have to scream, well...damn doctors.... do scream! Your intuition is the most important. Tell them so: talk about intuition and that you will put them in court if something happens to your child. Please, if you feel that don't let them persuade you of the opposite.

Kisses
------------------------------------------------------------------------------------------------

On December 1, 2008, at mid-morning, I made a call to the hospital ask a nurse program. Based on just the way Caden was hunched over just a little, we just assumed it was abdominal pain. Basing my answers on their questions in assumption that he was in pain, this put him in the category of needing to be seen immediately. Caden had a follow up appointment with his primary doctor who had diagnosed Caden with strep throat and then a virus after another emergency room doctor again diagnosed him with strep throat...without ever having tested him for strep throat...later that afternoon. I was not confident that my concerns would be taken seriously and opted to take Caden back to the emergency room.

Tue, Dec 2, 2008 at 1:15 AM

Hi Sweetie,

It is very late and I haven't even digested all of this yet. Caden and I are in Omaha, he was transfered here from Lincoln and we came by ambulance. Earlier, as you know, I took him to the hospital. But because we couldn't get him calm enough to do a scan of his stomach, he was transfered to another hospital in Lincoln so that they could sedate him and do a better scan of his stomach area. That came back and Caden's doctor was called in to come and talk with us. We were then told that Caden has a tumor on his kidney, and that his blood count was half of what it should be, and that the tumor was feeding off of the blood. He said that Caden had a rare condition called Wilm's Disease, which is cancer of the kidney on a child. Aaron was there, and Aaron, who is never moved by anything other than anger, cried. I was a complete mess. They said they would need to transfer him to Omaha where a surgeon and oncologist were waiting for Caden because they wanted to biopsy tonight or even remove the tumor. I went with Caden to Omaha by ambulance as I mentioned above and as soon as we arrived, he had a room full of staff, the oncologist and the surgeon talking to me about chemo and radiation and putting a port in his chest and so many other things that my head was spinning. I had to sit down or I was going to throw up. The surgeon and the oncologist went to look at the scan from the lincoln hospital and decided that they needed an even better view...and that he did not need to have surgery tonight but instead tomorrow. However, he needs blood to do that. They took all kinds of blood, hooked him up to an IV....the child has been through complete hell today. They had to insert and re-insert needles and on and on and on.

That brings us to now. He only just fell asleep less than 30 minutes ago and they are about to start the blood transfusion. In the morning they will do an MRI to have a better look at his kidney and then the oncologist and surgeon will decide what to do next.

I want that my baby only have autism. I hate this fucking cancer shit and I am so upset, so angry, I am exhausted emotionally, mentally and physically. I told them he was sick. I told them it wasn't a throat issue. And at the first hospital, they did their best to make me feel like I was crazy, asking me am I sure he is lethargic and not moving...because he was excitable there...grrrrrrrrrrrrrr

Aaron will come here sometime tomorrow.

I can't say anymore. I don't know what I feel anymore. I am just tired, I am worried about my kid.

Chemo week 7 and back to the beginning part 1.

2009-01-26T12:26:00.001-06:00

*The song Taterbug running in the background was written specifically for Caden by songsoflove.org.*

This is week #7 and the start of phase 3! We are at Children's even as we speak. Caden did require a transfusion this time. His levels are a little lower than last week but not by much. The doctor was concerned he'd need one in a day or two with the two drugs he gets this week, so instead of waiting to see, he just decided to do the transfusion. Caden is handling it all very well. For those of us who have seen some behaviors increase these last couple of weeks, hopefully this transfusion will help him feel a little better and we will not get pinched so often :o)

I've decided to go all the way back to the beginning and put the emotion back in and not regret it, lol. I think it is important to share this the way it happened. A lot of this has been "documented" through conversations with my very good friend Nela. And that's what happens when you live in one country and your friend in another...the emails are frequent because we can't be there in person. All of this was lived in email and therefore "documented". So, initally when we didn't know for sure what was going on with Caden, when he was still running the fevers and not eating, Nela and I had a conversation about this possibly being an appendix problem...

Mon, Dec 1, 2008 at 9:52 AM

"...that's what I wondered too, initially, but he screams no matter what we do. A doctor cannot tell for sure what hurts on him because he is too busy screaming at being touched by anyone. I am frustrated and very concerned and I just tried to feed him again and he won't eat.

What I can say is that, in the past, when I take him to the store, I put him in the cart. He is a big boy...so to lift him, I put my hands under his armpits and use my arm and elbow to help lift him and put him in. This has never bothered him before until a couple days ago when it seems it hurts him when I do this. However, where it hurts him is on the opposite side of where his appendix is.

What do I do when I go to the doctor? Let them tell me again that he's fine? That in a couple more days he will eat again? Because I feel very alarmed right now and feel that something is very wrong Sweetie but I don't know how to tell them this without seeming like I am some freak mother who wants something wrong with her kid. I am scared for my son. He cannot talk and he isn't acting like my Caden at all.

The fever is gone...he doesn't sound like his throat hurts at all and yet he won't eat...something isn't right.

Kisses"

Portuguese is Fun!!!

2009-01-24T11:04:00.000-06:00

Josh...

And the Portuguese ARE fun! LOL

Just hanging out at home...

2009-01-23T22:03:00.001-06:00

Video from hospital

2009-01-23T10:49:00.000-06:00

in December.

Chemo #6

2009-01-22T12:55:00.000-06:00

Back again on Monday to Omaha for chemo #6. Just vincristine like the week before. Caden did not require a transfusion, though his counts were low. They were showing recovering from the prior couple of weeks so that is good! Still has hair, no noticable clumps missing or anything, but there does appear to be "changes" as it seems to be thinning.

Week one of transition back in to school seemed pretty successful! He gets tired and cranky, but does his tasks. The first several days he did not want to go. But here we are in transition week #2 (which is just three half days this week due to days off from school) and today he went in giggling his head off...lolol...

Next week his protocol calls for dactinomycin and vincristine AND is the start of phase 3!!! There are 9 phases so he is 1/3 done! This is the week he would normally receive a CT scan on his abdomen but Dr. Coulter decided not to put him through that at this stage. Looks like he will need a urine test, blood draws and a physical but nothing out of the ordinary.

Tuesday, I will return to work!

LOL

2009-01-22T09:52:00.000-06:00

Beijinhos beijinhos beijinhos!

Happy Inauguration Day!

2009-01-20T07:32:00.000-06:00

George W Bush whispered to Michelle Obama while he was getting on board the helicopter: "You will have the time of your life, I promise". Hope for the future!!!

The blog will be updated a little later as we will celebrate this very important Inauguration!

It's not about weathing the storm...

2009-01-14T20:45:00.000-06:00

It's about dancing in the rain. Acceptance. Celebration!

Caden is currently transitioning back to school...right now at about a half time schedule until the 27th of January when he will return full time as long as there are no serious complications beforehand. His first day back was yesterday for three hours. Julie said that Caden was upset for about 25 minutes but that he did just fine after that. Today he was upset for about 3 minutes, lol, but that's good!

Still no real complications to speak of. He still has his hair, too, but the same issue of feeling coarse. I've heard that some kids lose their hair around 6 weeks. 6 weeks will be this coming Monday...so....let's see!

I had to wait a bit to post this so that my supervisor could notify people at work, but I too will return back to work on the 27th! I'm looking forward to getting back to the routine. So see you all soon!!!

And now, meet Caden's oncologist!

Don W. Coulter M.D.

Dr. Coulter received his medical degree from the University of Arizona College of Medicine in Tucson in 2002. He completed his pediatrics residency at the University of North Carolina School of Medicine in Chapel Hill in 2005 and completed his fellowship in pediatric hematology/oncology also at the University of North Carolina School of Medicine in 2008.

Chemo #5

2009-01-12T19:18:00.000-06:00

We returned to Omaha today for another round of chemo. This time it was just vincristine. Caden's hemoglobin was low as a result of last weeks chemo. He did not need to have a transfusion but if his levels aren't better next week he will. Otherwise he is doing very well!

We got the go ahead to transition Caden back into school!! This is a big step and I feel an important one. He needs to have his therapy and instruction. He also needs to have his routine and to learn to be able to trust that not everyone is going to stick him with a needle. Caden will begin with half days and then full time if all goes well.

Angel Aida...

2009-01-08T04:45:00.000-06:00

True to your name. You will be missed terribly. Rest in peace sweet lady.

Chemo #4, Cycle 2 and hmmmm...mysterious!!

2009-01-05T16:04:00.000-06:00

Today was chemo #4 and the start of cycle #2. Caden got vincristine and doxorubicin this time around. Doxorubicin is a drug he has not had yet, so for us this will be interesting! So far he's cranky but nothing terribly unusual. Had a nice chat with Dr. Coulter, watched Thomas the Tank Engine for a couple of hours and we were out the door! I will be keeping a close eye on Caden this week. This drug has harsher side effects so I want to be paying close attention. Caden's hair is shorter as you see in the picture...he had a hair cut, but has not lost any yet.

I went to get my two older children from school today when Caden's teacher Julie handed me a card and specifically said that it had been handed to her...she's not sure who it is from. Someone left us a very generous gift card inside of a card and oh my goodness....I just don't know what to say or how to thank you! And literally I don't know how to thank you! LOL My kids and I have been trying to guess who you are "Hartley Friend", and we're not able to, at all. That smiley face is a signature thing of someone I know :) but the handwriting completely baffles me!!! Whoever you are, you are a saint!!! Hugs to you!

Angel Matthew...

2009-01-03T10:34:00.000-06:00

Rest in peace, sweet child. Read about Matthew.

Happy 2009!!!

2008-12-31T22:52:00.000-06:00

I hope that 2009 brings you all the absolute best in life. May it be everything you want and need for it to be!!!

Let's talk a little bit about what brought us here. I've left the majority of my emotion out of these posts, like most people do. I've seen posts where, usually women, will finally say exactly what they have been feeling during this whole process, and then later either retract it or apologize for doing so. Let's not get caught up in that. Let's be very real about this: Cancer sucks. We feel like we are on a roller coaster violently running up and down and in and out of life during this, and sometimes, we have a hard time catching our own breath or stop our own heads from spinning. That is real. One minute we are fine and the next we are beside ourselves. This isn't a pleasant experience by any means.

There are those of you know have spent a good deal of time with me, or had, on a daily basis, either online or at work who know that I see all things in life as a lesson, and that somehow, everything is connected. Tonight, I pay tribute to those connections and continue to see life, even this, as an opportunity to grow and prepare for something else in the future.

The cancer issue with my son is not the first in my life...preparing for this started when I was 16 years old. I had a friend who died, from oddly enough, kidney cancer (his name was Bruce). For him, it was too late when it was discovered. It had already metastasized and killed him in a matter of months. Three years later, the mother of the guy I was dating was diagnosed with colon cancer. It was caught very early, she had surgery within a short period of time, and she survived. I was with her after her surgery, making sure she wasn't pulling needles from her arms and most importantly, that she woke up. IT was very important to me that she did. Her name is Jeannie, and while I haven't seen nor spoken with her since my mid twenties, I believe that she is still alive.

Life was very quiet after that for a number of years. Then, in 2005, Nela found a lump and was subsequently diagnosed with breast cancer. With Nela came a vast number of women, most if not all from Portugal, who too were diagnosed with breast cancer (and I think some others with other forms). They all started networking through their blogs forming a group of them that eventually met and are still together today. Some of them have died...Claudia, Anixinha, Buba...I never knew Buba nor Claudia but Anixinha touched my heart in a way that I cannot explain. I walked the Susan G. Komen Foundation walk in October 2007 in honor of all of the women, with their names and pictures strapped to my chest. I met Aida, a beautiful and angelic, soft spoken woman in Porto when I was in Portugal. Through those ladies I met other ladies, both in person and online who do not suffer from breast cancer but are involved in the lives of these precious ladies...Laura, whom I adore has something in common with me: she has a severely autistic son. I've spoken with Mimas through email, CrisJ in comments on blogs and the countless other women including Alda, Gigi, Isa, Lou Lou...and others...

I saw a video about a type of breast cancer called IBC (Inflammatory Breast Cancer) on a news site and saved it to my desktop, later uploading it to youtube and to date it has been viewed almost 675,000 times and passed in emails and posted on blogs. Through that video, I met a woman IN it. Patti Bradfield, the mother of a woman who had been diagnosed with this type of cancer, standing on the street corner asking if people knew what IBC was. Patti is the president of the Inflammatory Breast Cancer foundation and making waves in educating people about this disease. Patti and I have spoken on the telephone, on skype...and all of this before we had any idea my own son had cancer. Sadly, Tina, Patti's daughter, passed away from the disease over a year ago. Patti is still going strong.

But never did I consider that in all things related, that this would be something that would affect my 5 year old son.

I believe we have in our lives people who teach us, without knowing, what is headed our direction. I am in good company being surrounded by people who have survived and those who did not, and it makes this fight a little bit easier. I've seen what some of them have had to deal with. And they are the wealth of knowledge.

So tonight I honor all of you and I give you my thanks because without you, I'm not sure how this would have gone.

It really doesn't end there, either. I met a mother who has a 6 year old son who had a wilm's tumor. She lives in the same city, and if that isn't strange (it's not, lol), her son and my son go to the same school AND we work for the same company (different buildings). I've also become a part of a listserve group dedicated to wilm's issues. We always say there that it is nice to meet new people, and to have each of us there, but we're sorry for the circumstance in which we had to meet.

I still say that there is a reason for everything...

And PS...Nicha my dear, I couldn't not mention you. Your thoughts and concern in email really touched me.

**

Radiation Day 7...DONE! Chemo week 3.

2008-12-29T21:19:00.000-06:00

Last day of radiation! Wooohoooo! We are happy to have this phase over! It took a lot to get him to sleep for radiation though...the child just keeps fighting! The radiation techs told me he continued to fight for another 5 minutes after I left the room...and we had already been trying to get him under 15 minutes prior. Silly kid. At the end of radiation, all patients get to ring a bell signifying the end of the radiation treatment. Caden, of course, was sleeping, but the nurse who takes him to recovery rang it for him as they wheeled him off...lol...

Chemo...chemo chemo chemo. Today was bad. Radiation didn't leave his port accessed...and sometimes they do, sometimes they don't...no big deal. But he had to be stuck again. Then, as Caden manages to do, he pulled out the needle in the port. And it HURT. He screamed. So then there was more restraints, another poke...but they administered his chemo and pulled it out all within a couple of minutes. This is very hard on him, and it isn't easy to watch. I particularly hate restraining my own kid.

Tonight, he is sleeping with some rosey cheeks. I took his temp just to be safe...he is within normal, so not sure what that is all about.

I have noticed the skin on his head is becoming very dry...not sure if this is a sign of things to come, but his hair also feels very coarse. It does appear to be thinning...so let's see...

Radiation Day 6 and Christmas

2008-12-28T20:08:00.000-06:00

Hi everyone! Olá minhas amigas! Radiation day 6 went fine. I reset my alarm clock but forgot to turn it on...woke up at 7, was supposed to be in Omaha by 8 and I needed to stop and get gas! And it was foggy! But we were none for the wear...we arrived to Clarkson at 8:25, he went in for his treatment, went to recovery and we were out the door by 9:00. Fantastic. We spent Christmas Eve in Waverly (and as predicted, Caden didn't last long!) and celebrated with family there. Caden left with his dad about 45 minutes into it while the older two and I stayed. Christmas was spent with my mom and dad, and there were evening plans with the kid's great grandparents. As you can see, Caden still has a full head of hair, though we are not expecting that to last much longer. Monday will be radiation treatment 7 and he will go for chemo immediately after. A week from Monday will be the true test...he will get another drug that may cause sores in his mouth. We hope not, but as he has not had this drug yet, it could make for an interesting time! Check out the treatment timeline for this particular protocol...click the picture for a larger version.

Radiation Day 5

2008-12-24T21:26:00.000-06:00

Day 5 done and over with. We were in and out in an hour. I love the early appointments...it's easier on Caden. He hates being there. This time, as he was going to sleep, he kept scratching his nose to remove the oxygen tubes that go up his nose...only they weren't there yet. He doesn't like anything foreign on him! lol

His radiologist confirmed that there will be 7 treatments instead of 6. They are treating a very large area in his abdomen and they wanted to do it at a lower dose so that it wouldn't make him as sick. Monday, December 29th will be his last radiation treatment.

I hope that all of you will have a very Merry Christmas!

Radiation Day 4

2008-12-23T19:31:00.000-06:00

We were up to Omaha and back by 10:00 this morning. Another radiation complete. Caden is doing pretty well with these. He only had the one day of throwing up last week and that lasted only a few minutes. Since then...nothing. He is still eating everything, sleeping 8 hours a night and not needing naps and generally happy!

For some reason, even though we were told 6 days of radiation, I was told today he was scheduled for 7. I will have to ask his doctor about this when I see her, but if that is the case, he will be done with radiation on Monday.

Merry Christmas to all!!! Feliz Natal!

Radiation (3) and Chemo (2)

2008-12-22T15:35:00.000-06:00

The streets in Lincoln are icy. They suck. It always amazes me that as soon as I get to the highway, they are clear. Wonder how that is possible...

Another trek to Omaha...starting this morning with radiation at Clarkson (UNMC). It took Caden a little while to wake up like the first time but as always as soon as he is awake, he is allowed to leave. We grabbed lunch on the way to Children's and Children's was bussssssy. It's sad to know so many little people, especially in the oncology area, are that sick. A couple of bald heads, some blood transfusions going on...and some real, real little people. Stupid cancer.

Chemo went fine...his port was already accessed because of radiation so they drew blood and about an hour later the chemo and that took 30 seconds. A quick chat with Dr. Coulter and we were out the door.

Let's see how the week goes...

Map of Wilm's Kids

2008-12-19T20:30:00.000-06:00

No Radiation Today

2008-12-19T05:51:00.000-06:00

Due to the weather, we cannot go to Omaha for treatment. So there will be a three day break.

Caden has begun to get sick. Cancer is as real as it gets until they get sick and then it just smacks you in the face.

Radiation, Day 2

2008-12-18T11:53:00.001-06:00

Caden's appointment was at 8:00, and we were out a little after 9:00. He's getting used to this routine but complains and that's understandable. He cracks me up...one day I will try to get a video of this...but he goes in, lays on the table, waits for them to access his port (he still needs to be restrained for that, and still gets upset) and as soon as the medication is in to make him sleepy, he rubs his eyes, and within 30 seconds goes under. His eyes roll in the back of his head and then he yawns...bahahahhaha... The whole process start to finish with radiation takes about 30 minutes and then he gets wheeled up to recovery. Today, when the radiation was finished and they were taking him to recovery, he had already awakened. He still seemed a little "drunk" but did very well today!

He is not complaining of any stomach aches, and honestly acts like nothing has happened this week between two radiation sessions and chemo on Monday. Who can tell??!!

1st Round of Radiation

2008-12-17T17:55:00.000-06:00

We've moved from caringbridge to blogger because blogger is the kind of site I am used to using! It offers more features...I can add pictures to posts, videos and so on, and blogger is searchable as caringbridge is not. The previous posts from CB will be moved here in the near future!

Today was the first round of radiation. The nurses and techs accessed his port and he went to sleep within minutes of getting on the table. It's so strange to watch him fight them and then go limp, lolol. The procedure took about 30 minutes...they have a big area of his abdomen to cover since the tumor was so big. He went to recovery immediately after and it took him about 45 minutes to wake up. He wasn't fully awake when we left so he was walking like a drunk person...

The tech said to me that this is so unfair for Caden...first to be autistic and then to have cancer. Well no, it isn't fair. I can't imagine what he must be thinking.

We came home and Caden seemed to be in some pain...every once in a while he would scream. I gave him another anti-nausea pill and since seems to be fine.

1st Round of Chemo

2008-12-15T21:05:00.000-06:00

There really isn’t much to share on this…Caden had chemo today with few problems. He complained while having his port accessed but nothing major. He watched a couple hours of Thomas to keep him occupied. When the nurses came in to administer the chemo, he was a little upset but only because he didn’t understand what was going on. It took all of 5 minutes and we were on our way. On the way home, he wanted to eat…so he ate. Almost 8 hours later and still doing very, very well!

While we were at Children’s, someone left Caden a very special gift…we don’t know who, just that it was someone who follows Caden’s caringbridge page and brought something up for him…a great big elephant!!! Caden is not usually real big on stuffed animals, but he adores this thing! As you can see in the picture, he loves to sit on it! Whoever you are, we thank you! What a very nice and generous thing to do!

My People!!!

2008-12-12T22:33:00.000-06:00

Today was fairly uneventful for Caden…but he is in good spirits and acting pretty normal! Last night he even attempted to gallop…and for those of you who are with Caden a great deal…he does that a lot…but it must have hurt because he stopped as soon as he started, lol.

I stopped in to work today to visit my people (lol)…it was good to see you all! And a great big THANK YOU for your generosity! The gifts and card were so very nice of you all. You continue to amaze me with the support. Sandy so nicely gave me a back rub while I was there too! She does them better than anyone I’ve paid to do them…hahahaha!!! I miss you all but I know that you all are understanding of the situation and I appreciate you all!

Becky!!! Ok folks, Becky was with us a lot during Caden’s hospitalization…lol…she was his Care Partner (or whatever they call you!) a couple times while he was there. Caden had to have a one on one person because he was pulling IV’s out and all those things that Caden does. She knows first hand about Caden’s problem solving skills and that they do not lack…lol…I’m not sure how you managed to get through 12 hours Thomas the Tank Engine with us (hahahahaha) but you did so graciously. I enjoyed your conversation! Good to see you here!

We’re hoping the weekend will be a quiet one. Monday will be the beginning of all things interesting…

Getting Ready for Radiation

2008-12-11T15:33:00.000-06:00

Quick trip back into Omaha this morning for a scan of the area that will need radiation. Caden will receive 6 treatments starting Wednesday, December 17, minus the weekend between. Monday, December 15th, Caden will receive his first round of chemo. Eventful week coming up!

Cancer Center

2008-12-10T09:09:00.000-06:00

Update from yesterday…

We met with Dr. Lin at the Cancer Center and that went well. Caden did not like them trying to get a blood pressure on him or any of them coming close to him, but they all understood and thought it was best to just leave him be while we discussed his plan.

Tomorrow morning, we will trek back up to Omaha for a scan at UNMC’s main campus. While we were seen at the new Cancer Center, there are anesthesiologists only at the main campus and we will need them as Caden will be sedated during the procedure. They are doing the scan to map out his course of treatment which will then begin on Wednesday of next week. He will receive 6 treatments in a row (minus the weekend in the middle).

Caden will also have the consultation for chemo and begin chemo next Monday morning at Children’s hospital. I will know more then about how many treatements he will need.

Yesterday, Taryn and Karen came by with a massive amount of groceries!!! Too cool! I don't know who all was involved in making that happen, but we thank you very much! Won't have to get groceries for a long time, lol!!! You all are awesome!!!!

Appointment

2008-12-09T14:10:00.000-06:00

Gotta love laptops, I am telling you...

We've just arrived to the Cancer Center at the University of Nebraska Medical Center - Village Pointe. Appointment is in about 15 minutes. Little man is eating some chocolate donuts he got from the walgreens down the street...lol.

We'll update again when we arrive back to Lincoln.

Chicago Has Spoken

2008-12-08T17:40:00.000-06:00

The results are in from Chicago and they agree with Children’s: Stage 3, favorable histology Wilms tumor. I spoke with Dr. Coulter just a few minutes ago and the consultation and chemo will begin on Monday, December 15. A week of rest, right? No no no no…lol….the consultation for radiation will be tomorrow at 1:00 in Omaha. I will know more about when the radiation will begin after the consultation.

We received a huuuuge basket from Hartley today! I took the older two to school this morning and dropped Caden off with dad for a bit. The basket was full of snacks that Caden loves, a bunch of Capri Sun drinks, lol, books, a little something for Jazzlyn and Josh and some stuffed animals. There were also several gas gift certificates, gift cards for McDonald’s and Burger King, and a pre-paid visa!!! Thank you all sooo much!!! I will post a picture of it in the pictures link!

Again we appreciated all of you little notes you leave us here and for all of the well wishes! I do see each and every one of them. I appreciate also the emails!

WE'RE HOME!!!!

2008-12-07T14:21:00.000-06:00

Caden is in his favorite spot: my bed. LOL He's eating and relaxing.

Sooooooooo...we have poop!

2008-12-07T12:00:00.000-06:00

The surgeon has been in and now the going home process has started. Look for updates later. The surgeon wants to see him December 23 to make sure healing is going well and to give the blessing to begin the chemo and rads.