Fever...strikes fear in the heart of every oncology patient in the world.
Why would a word like "fever" be such a bad word...
why would a FEVER frighten you?
Simple.
If a temp gets to a certain parameter (in our case 101.5) and you have a central line for therapies (like a Hickman or Port) you have to go to the hospital.
Even though its just a fever!
It's not like when the rest of us get a fever...you don't just rest and take some Tylenol...in fact, you do quite the opposite.
This particular fever started with Zach on Saturday. Immediately, we separated the boys in the hope of not transmitting Zach's germs to Braden.
No such luck.
A series of events kicks into play once Braden gets a fever. Braden's started this morning when I woke him up for school and I could instantly tell he had a low grade temp of around 100.
Momcologists become thermometers because that temp means in or out of the hospital...it means the difference between being discharged from the hospital after a stay or continuing to live at the hospital.
I can literally feel Braden's temple with my cheek and tell within a couple decimal points exactly what his temp is. We've lived this 24/7 for almost 6 years and I lived for years in the hospital laying right beside Braden feeling his head with my cheek every five minutes or so to check for the fever in hopes we could go home.
The best four letter in the world...HOME.
And as a result, I've become a thermometer. ;)
The first thing you do when you feel any warmth, is confirm it with a thermometer to see "the number". You hold your breath while that thing ticks away and then you take a deep breath while hoping it's less than 101.5.
This morning, it was 100.1.
WHEW!
Based on that number, I headed down the left side of the "Fever Action Plan Flow Chart" rather than the right side. The left side is a much shorter side because the right begins with call the hospital and tell them you are coming in.
There's actually one question to answer to decide which chart to even pick which chart to use..."is Brian in town or out of town".
If it's the "Brian Is In Town Chart", everything is going to be simpler. If it's the "Brian Is Out Of Town Chart", things are going to be much more complicated with me having to ask friends to help (which I am better at now, but still stink at it).
The very first thing I do is begin the "Fever Ward Off Procedures".
It's at the top of both flow charts...
in bold print.
Those procedures are not unlike waving a dead chicken in the wind while facing west...or whatever the voodoo/mojo deal is.. LOL!!
Step one, kiss him and say a prayer.
Step two, give him his First Tiger and Second Tiger so he can hold them and feel better.
Step three, get all the covers off of him and if he has on pants, take them off. No reason to have blankets and heavy pants to help heat him up (and it actually CAN make a difference).
Step four, stop snuggling tightly because your body heat doesn't help. You only have to do this until the fever goes down or it hits 101.5...at 101.5 it's already too late so just snuggle.
Step five, alert school and find a ride for Zach (so much easier if we are using the "Brian Is In Town Chart").
Step six, post on Facebook...
Seriously.
Get people sending positive thoughts and prayers.
It works!!
It really does!
Step seven, take a shower because it may be the last one you will be taking with warm water that actually comes out of the faucet at more than drip for several days in the event he is admitted to the hospital.
Step eight, begin packing procedures which I will describe in just a bit because it's pretty complicated. LOL!
Lastly, step nine...wait for the temp to do what it's going to do while praying and hoping it doesn't hit the magic number...important to keep the covers off and continue to pray.
Once it hits 101.5, we MUST go in to have cultures taken for each lumen of the central line because a bacteria could be growing in the line and that can be deadly. They can quickly go septic and die which is pretty scary.
If we are lucky, it's between the hours of 8:00 and 4:00, we can go to clinic and avoid the ER.
It we are not lucky, we have to face the dreaded ER.
Another reason to fear a fever.
The ER folks get us into a private room to wait our turn fairly quickly after check in so we are not exposed to everything else that is in the waiting room since our kids have a weakened immune system BUT it's not quick enough. I once had a lady behind me in line who kept hitting me in the back of the legs with the ER's wheelchair her son was in while he was throwing up violently into a bucket. I got that she was in a hurry but hitting me and exposing us all to the splattering wasn't helping it move faster.
And this was when Braden had no white blood cells. Every ER visit is a prime opportunity to pick up other fun illnesses. Like the lady in front of me one day who asked her son to say hi to Braden...he did and then very sweetly reached up and touched his leg to be reassuring and nice. It was very kind...
Then she told me her son had meningitis and they were back "again" because it kept flaring back up.
Awesome.
ER visits can make a bad situation, deadly.
I'm still trying to get two Haz-Mat suits to wear into the ER.
Not kidding.
When you get to the hospital, they access the central line. Okay...again this is where you pray for clinic and not ER. The ER staff is NOT used to accessing and probably received training on it "one time" but they don't do it routinely.
The shaking hands and instructions on the tray are the first clue they have...
no clue.
Bonus Tip #1...never allow a resident or nurse in training to access your child's port.
NEVER.
I won't even go into that story. Just don't do it.
SO...I refuse to allow the ER staff to access and ask them to find someone in the ER who has worked in oncology (there are some there) OR I ask them to call someone on the oncology floor to do it. Braden's a tricky access and I'm not going to let someone poke him 8 times to get it. This always ends up badly with hurt feelings on the part of the ER staff and I apologize and tell them it's not personal and that I'm just not nice.
Still, it still never ends well but I'm willing to have some "awkward time" in trade for less pain for Braden.
They draw the culture, and then we wait for a white blood cell count. If it's below a certain number and there are not enough white blood cells to fight infection, he begins a regimine of antibiotics while they bake the germs to see exactly which ones they are...then based on that, his drugs may change so it can address the specific type of bacteria in the line.
If his white blood cells are okay, we get a dose of IV antibiotics and then go home while they bake the cultures to see if a bacteria appears.
IF it does appear, they call you at any time night or day and you have to go inpatient for at least 48 hours.
If they don't call you are in the clear, but those 48 hours of baking bacteria makes you nervous and cringe every time the phone rings.
If the white blood cells are low we get admitted.
IF we are really lucky once admitted, we go home in 48 hours meaning the fever breaks and the antibiotics seem to be doing their job and we can do the remainder of the doses from home!
If we are NOT lucky and the fever continues, we stay put until it does stop. We've been inpatient for the full 14 days of doses many times.
Fevers can mean death. A major reason to be terrified. Braden has many severe antibiotic allergies so it's always a tough spot to try to find an antibiotic that will work for him, which is scary.
Oh and you cannot give any Tylenol until the cultures are drawn so they feel MISERABLE and you can't help.
And you can never give Motrin because it can cause them to bleed out with a central line. I actually had an ER doctor offer it to Braden once...I reminded her that was a bad idea. ;)
She said, "oh that's right...I forgot!"
Whoops!!
(that's certainly terrifying)
Then there's the packing. Not a terrifying reason but a big one to not enjoy fevers. Forget something when you are on the "Brian Is Out Of Town Flow Chart" and you are out of luck because you aren't going to get it for several days.
I used to always keep a suitcase packed and in the back of my car. I haven't had that in my car for a long time BUT I do have one packed and ready to go at all times in the closet because there's no time to throw things into a suitcase when you have to rush to the hospital for those cultures to be drawn.
When Zach was smaller, I used to even have a bag packed for him so the "lucky person" I was able to beg to keep him would be able to grab it for him.
Thankfully, he's old enough that he can now pack his own.
Well...he might forget his clothes and a toothbrush...but he would NEVER forget his i-Pod or Nerf Guns...
gotta get the important stuff first!! ;)
Then there's my backpack.
I always have a backpack filled with toys, books, snacks, IV line dressing covers, a ziploc baggie, and a change of clothes for both of us. I take it with us every place we go no matter what day.
(The change of clothes isn't for overnight...it's in the event of throwing up. So is the baggie. We learn from experience!)
That bag is ready all the time.
There are still two more bags which must come with us. First, Braden's backpack of tigers and blankets...he would cry the entire time without them. And his bag of electronics to entertain him (dvd player and iPad)...
or I would cry the entire time without them. ;)
It's good to have something to occupy the endless hours. Never depend on hospital electronics.
EVER! :)
Another reason to dislike fevers...they ALWAYS happen on a holiday or special event.
Tomorrow is school picture day.
He's been sick for pictures Every.Single.Year....
except for last year. We got lucky last year. The problem is that IF he misses pictures day tomorrow, we have to do retake day which isn't that big of a deal except we learned a long time ago to never expect tomorrow.
I don't know why I need those silly school pictures, but I do. It just makes me mad that cANCER and his cANCER hardware could stop them from happening.
I just want to see his sweet picture in the yearbook, Braden Hofen 3rd Grader.
Could be the last one.
His temp is down to 98.5 right now with no Tylenol having been given...
(told you posting for thoughts and prayers works) so I'm hopeful we can make pictures.
Braden's Army rocks!
TAKE THAT cANCER!
And the biggest reason we fear fevers is because it could mean the cancer is raging again. Fever is your body's way to build up warriors to kill foreign invaders inside the body. His is bumping up because he has a cold...the cold is obvious....
but...
it's the first place your head and heart go with a fever.
What if it's not just the cold?
What if his body is fighting more cancer cells too.
So for now, we wait, monitor the temp, hope it doesn't spike so we can stay on the left side of the "Fever Action Plan Flow Chart" and that he can do pictures tomorrow. No fever since 8:00 am so far.
Because his temp is down, we are sitting on the couch, snuggling with his favorite blankie watching Tom and Jerry while I type.
That's the good thing about fevers, I get to be with my baby all day long.
The BEST thing about fevers...he's still alive to HAVE a fever.
So even though it terrifies me, annoys me, we are blessed to have this stupid fever.
It's a strange thing to be grateful for...and it's crazy to have to be grateful for the smiler pile of crap but I am.
Please keep sending hope the fever stays quiet and we get to stop at the initial box on the flow chart...
Maybe someday....years from now he will have a "normal fever" without cANCER in his life, without a central line...just a missed day of school.
Now THAT would be a VERY happy day!!!
Wednesday, October 16, 2013
Thursday, October 3, 2013
Living...
Our foundation, Braden's Hope For Childhood Cancer, (www.BradensHope.org) just had our second annual HOPE Gala on the 28th of September.
It was an awesome event that many kind, supportive people attended to help us raise awareness and funds for targeted treatments of childhood cancer.
And it was a big job to pull it together for 550 people...raising about $90,000! What a great feeling!
Since Saturday, I've been rather melancholy. I couldn't really wrap my head around why until today...when I figured it out.
I've been the President of Braden's Hope almost every minute of every day for several weeks getting the exciting gala preparations done with my friend, Jenny. Thank goodness for Jenny....she worked twice as hard as I did!! She is AMAZING!!
I've been detouring with the boys....but I've honestly been in work mode around the clock for the most part.
Not something I'm proud of...but it was necessary.
I gave my speech on Saturday night...an update on the foundation and information about childhood cancer and targeted treatments for our kiddoes.
And then after the live auction,
I snuck upstairs to our room where Braden and Zach were sleeping while their babysitter cared for them.
And I woke up my soundly sleeping baby and gave him three shots of chemotherapy.
That sucked.
Beyond belief.
My poor baby!
Shots suck...
but shots when your mom wakes up you late at night in a strange place to poke your leg three times with burning chemo...
pretty much the king of sucky circumstances.
During my speech, I talked about targeted therapies and how important they are for our kids with cancer. I compared targeted therapies to treating dandelions in your yard.
You wouldn't rent an excavator and dig your lawn up 8 foot deep to get rid of the dandelions...you would go to the lawn and garden store and get the spray that kills the dandelions but leaves the grass largely unharmed.
Targeted therapies work that way...
chemo is the excavator method. It kills cancer cells...and healthy cells too.
What I didn't have the strength to say was that while funding targeted therapies has been our mission since our inception,
we had no way of knowing that on July 8 we would have a personal example of why targeted therapies are so important when Braden was diagnosed with TREATMENT INDUCED Leukemia.
Treatment induced....
...yes...
CAUSED by the treatments he received to save his life.
That's messed up!!
I just couldn't talk about it and take a chance of losing it in front of everyone during that speech.
So after the shots....
I went back downstairs to clean things up and thank everyone.
And get back into President mode...not mom mode. Just "do" not "feel".
The last several days, I have been "feeling mode" and not in President mode very often.
I put up Halloween decorations and every time I pulled out something the boys had made when they were little, I choked back tears.
I know it's okay to cry...but I don't like to cry...
because once I start...
I'm not sure when I will stop.
We just finished the last of 7 days of chemo shots last night.
He's so tough...he never wants to do them and always says, "Let's not do our shots today mom!"
And then he does them.
He says"ouch" each poke and he squirms and tries to push my hands away so that damn needle doesn't come close.
And after each shot, he smiles and laughs and happily says "that one...or that two"...and finally "last one"...and then cheers and high fives and hugs!!
Every time...
He is SOO brave!!
I'm pretty sure I would look at the shot giver, curl up my fists and say, "go ahead...try it one more time and let's see what happens"...
And now his little legs are completely covered in big red welts from the chemo shots...and they are sore and a few blister.
I know he has to have the shots.
It's NOT a choice...
Yes, home health could come give the shots, but then I have to wait on them to show up whenever they want...take their phone calls about I need to come now instead of then...blah blah blah...and they would want to do them early in the day before they are off duty. I want him to have them right before he goes to sleep so he sleeps through the worst part after the injection.
And I have MS and have been mixing and injecting my own shots for almost 14 years.
So I do them so we can detour and do whatever we want whenever we want.
Now that things have slowed down with the President me, and I'm back to more of the Mom me...
I'm forced to feel again.
It's really a lot easier to NOT feel.
BUT...if I throw myself into the not feeling work thing...I miss out on the important stuff...
We need to make Halloween decorations, collect fall leaves, go for walks, play in the park...
because it may be our last fall together....
our last Halloween.
Right now, everything is a potential last.
And that SUCKS.
Period.
Today I took Braden to the park to play...
and we had a ton of fun and laughed and giggled and played like nothing was wrong.
Our best crapfest defense is a joyful detour offense.
It's how we fight...it's how we ALL feel better!
And tonight, I look at his little legs...
and once again reality smashes my heart into a billion pieces.
I am a hopeful realist.
And I believe in miracles....
but we LIVE every moment fully because we may not get that miracle on Earth.
It's a good way to live regardless of circumstances.
I wish I had figured that out before this cancer mess...
Learn from our situation...don't wait to live.
Carpe diem!!
And hope for tomorrow!
It was an awesome event that many kind, supportive people attended to help us raise awareness and funds for targeted treatments of childhood cancer.
And it was a big job to pull it together for 550 people...raising about $90,000! What a great feeling!
Since Saturday, I've been rather melancholy. I couldn't really wrap my head around why until today...when I figured it out.
I've been the President of Braden's Hope almost every minute of every day for several weeks getting the exciting gala preparations done with my friend, Jenny. Thank goodness for Jenny....she worked twice as hard as I did!! She is AMAZING!!
I've been detouring with the boys....but I've honestly been in work mode around the clock for the most part.
Not something I'm proud of...but it was necessary.
I gave my speech on Saturday night...an update on the foundation and information about childhood cancer and targeted treatments for our kiddoes.
And then after the live auction,
I snuck upstairs to our room where Braden and Zach were sleeping while their babysitter cared for them.
And I woke up my soundly sleeping baby and gave him three shots of chemotherapy.
That sucked.
Beyond belief.
My poor baby!
Shots suck...
but shots when your mom wakes up you late at night in a strange place to poke your leg three times with burning chemo...
pretty much the king of sucky circumstances.
During my speech, I talked about targeted therapies and how important they are for our kids with cancer. I compared targeted therapies to treating dandelions in your yard.
You wouldn't rent an excavator and dig your lawn up 8 foot deep to get rid of the dandelions...you would go to the lawn and garden store and get the spray that kills the dandelions but leaves the grass largely unharmed.
Targeted therapies work that way...
chemo is the excavator method. It kills cancer cells...and healthy cells too.
What I didn't have the strength to say was that while funding targeted therapies has been our mission since our inception,
we had no way of knowing that on July 8 we would have a personal example of why targeted therapies are so important when Braden was diagnosed with TREATMENT INDUCED Leukemia.
Treatment induced....
...yes...
CAUSED by the treatments he received to save his life.
That's messed up!!
I just couldn't talk about it and take a chance of losing it in front of everyone during that speech.
So after the shots....
I went back downstairs to clean things up and thank everyone.
And get back into President mode...not mom mode. Just "do" not "feel".
The last several days, I have been "feeling mode" and not in President mode very often.
I put up Halloween decorations and every time I pulled out something the boys had made when they were little, I choked back tears.
I know it's okay to cry...but I don't like to cry...
because once I start...
I'm not sure when I will stop.
We just finished the last of 7 days of chemo shots last night.
He's so tough...he never wants to do them and always says, "Let's not do our shots today mom!"
And then he does them.
He says"ouch" each poke and he squirms and tries to push my hands away so that damn needle doesn't come close.
And after each shot, he smiles and laughs and happily says "that one...or that two"...and finally "last one"...and then cheers and high fives and hugs!!
Every time...
He is SOO brave!!
I'm pretty sure I would look at the shot giver, curl up my fists and say, "go ahead...try it one more time and let's see what happens"...
And now his little legs are completely covered in big red welts from the chemo shots...and they are sore and a few blister.
I know he has to have the shots.
It's NOT a choice...
Yes, home health could come give the shots, but then I have to wait on them to show up whenever they want...take their phone calls about I need to come now instead of then...blah blah blah...and they would want to do them early in the day before they are off duty. I want him to have them right before he goes to sleep so he sleeps through the worst part after the injection.
And I have MS and have been mixing and injecting my own shots for almost 14 years.
So I do them so we can detour and do whatever we want whenever we want.
Now that things have slowed down with the President me, and I'm back to more of the Mom me...
I'm forced to feel again.
It's really a lot easier to NOT feel.
BUT...if I throw myself into the not feeling work thing...I miss out on the important stuff...
We need to make Halloween decorations, collect fall leaves, go for walks, play in the park...
because it may be our last fall together....
our last Halloween.
Right now, everything is a potential last.
And that SUCKS.
Period.
Today I took Braden to the park to play...
and we had a ton of fun and laughed and giggled and played like nothing was wrong.
Our best crapfest defense is a joyful detour offense.
It's how we fight...it's how we ALL feel better!
And tonight, I look at his little legs...
and once again reality smashes my heart into a billion pieces.
I am a hopeful realist.
And I believe in miracles....
but we LIVE every moment fully because we may not get that miracle on Earth.
It's a good way to live regardless of circumstances.
I wish I had figured that out before this cancer mess...
Learn from our situation...don't wait to live.
Carpe diem!!
And hope for tomorrow!
Sunday, September 22, 2013
Gratitude
How many times do we complain or worry or become upset about "stuff" each and every day?
The car didn't start and we have to get some place now, the grocery store is out of our favorite potato chips that were on sale, all of those little annoying things life throws at us on numerous, inconvenient, "bad timing" occasions.
We all do it...all of us at some point...
Even me! More often than I care to admit.
I also admit that other's negativity and ridiculousness becomes a source of amusement to me! Some things, some people, some situations are so wacky they can only call for bold, brazen, and hysterical laughter at their real insignificance.
Some people complain the majority of the time for the majority of reasons and seem to have little to say to convey gratitude. And a few "cherished" people seem to actually enjoy sharing the complaints and the fight against looking at the things that are going well in life.
For whatever reason, they enjoy the drama.
And that, honestly, make me sick...
and frustrated...
and very, very mad.
Negative things like posting on a neighborhood association site that someone's wind chimes are too loud and they bother you, which is then responded to by those in the hood who "chime" in and defend their inalienable right to have wind chimes that make them happy.
And you can imagine the responses to that and the firestorm that was created on this site...
Again...
Wind chimes!
Yup, this is a real story...not just a hypothetical example....it's not from my neighborhood (our neighborhood is AWESOME) rather my friend, Christine's neighborhood a few years ago.
Well, Christine jumped in on the conversation and gave them our story and the story of childhood cancer and how perspective might be a good thing to have with regard to wind chimes.
She told them wind chimes really weren't something worth all of the venom they were spewing at one another...threats of lawsuits and anger frothing from their fingertips and mouths as they spoke in whispers to others outside the computer keyboard.
And it quieted 99.9% of the drama...but there was still one "small" person who decided she had to respond and again proclaim her right to fight for whatever side of the debate she was on at the time.
You can't fix crazy and selfish...you just have to remind them of perspective, offer them the exposure to their craziness and selfishness, and then leave the poison behind and walk away from that. Let them be miserable by themselves because they thrive having a platform to debate and defend their craziness and selfishness.
And then hope and pray for them that some day, they will have "enough". For my blog about that...visit http://deliecehofen.blogspot.com/2013_03_14_archive.html
Braden and I just got home from Philly where he had labs and scans. We cannot "scan" for his pre-leukemia, but we have to scan for his neuroblastoma.
This is the longest period of time he has ever been off treatment for neuroblastoma. There's nothing we can give him for that right now because he has shown he's in a second remission for over 2 years and the treatments we were doing to clean up any dormant cells cannot be given due to his treatment induced pre-leukemia.
And...the neuroblastoma has got to remain in remission if he can eventually have a bone marrow transplant (which we are delaying because it could kill him OR leave him with such debilitating effects he wouldn't have a good quality of life after).
Oh...and because if we have taught his body to have an immunity for any of the remaining cells (to keep them dormant) once we do the bone marrow transplant, the neuroblastoma will rise back up again and he will once again be faced with "no known cure".
To say I had scanxiety about this visit doesn't quite do the feeling justice. Hope exists, but it only exists if the neuroblastoma stays quiet and if the transplant works perfectly and if we have REALLY killed every single neuroblastoma cell in his body so it doesn't come back.
Not likely that is all going to align.
So we are giving him 21 shots over 7 days, every three weeks to try to slow the progression of his pre-leukemia. Again, the only cure is a bone marrow transplant.
We know that our first sign that the shots are working to slow the progression of his disease will be his platelets not getting lower...and perhaps...PERHAPS...even rising a little.
Braden's platelets (the cells that are responsible for clotting your blood) were at 64,000 when he was diagnosed with the pre-leukemia (mds). Before round one of shots, they had fallen to 45,000 which was very scary because that could indicate progression of disease...and once it progresses such that his mds cells are at a large percentage, we have GOT to do bone marrow transplant to try to save him.
Our first stop in Philly was for labs at clinic. And Braden got to see his beloved Maggie...our nurse there. He ADORES Maggie!! And after flirting for some time, he ran into her arms, wrapped her in the tightest hug and gave her a kiss on the cheek.
Victory number one!
His platelet count (after two rounds of shots) was at 82,000!! When the sedation nurse (who I made find his counts a half hour after our clinic visit) told me and I nearly gave her the same reception Braden had given Maggie!
Victory number two!
Maybe....and perhaps we can even say "likely"...we are slowing the mds down with these shots.
That is AMAZING given Braden has had treatments for 5.5 years and his body has been through so much and his cancer cells have learned to adapt and mutate quickly to continue to grow.
The next day, we would have scans for the neuroblastoma to see if it remained quiet.
I know..there's a lot to keep track of...and each factor is a crapfest in itself. None of this is good news...it's all very bad...but we have a very small glimmer of hope at the end of the tunnel that is shining through.
And...our appointments had been on time that day and we got out of CHOP (Children's Hospital of Philadelphia) 40 minutes after our last appointment.
And THAT friends...NEVER happens!! We've waited for over 5 hours of his MIBG injection to arrive before.
Victory #3.
Now we had about 3 hours to "play" before 5:00 when everything closed.
So the afternoon we got the good platelet results, we decided to go to what Braden calls "the play room"...the Ben Franklin Institute. The Cathedral of Saints Peter and Paul is directly across Logan Square's "pretty water" from it.
It is impressive from the outside and after 4 years of traveling to Philly at least every 3 months, I had never been inside.
I decided that today...we were going in.
We walked past the row of homeless people who had an encampment beside the fence overlooking the highway. We walked past the drug dealers having an argument on the grass of Logan Square, we walked past the distraught people sitting on the benches contemplating life, we walked past the many tourists taking pictures at the fountain....
We opened the door and could immediately see into the massive worship space.
And we sat in the back pew...and my breath was just taken away by the beauty of this cathedral. It was absolutely amazing.
And I simply thanked God.
I thanked Him for our oncology teams in KC and Philly who we love beyond words, I thanked Him for platelets at 82,000. I thanked Him for time to play that afternoon, I thanked Him that we had a home to return to with our "Daddy" and "Zachy", I thanked Him that we were blessed to have friends who have helped us so we can afford to travel to Philly to get the best neuroblastoma team in the world (in my opinion) to work with us, I thanked Him for safety, and I thanked Him for all that amazed and delighted Braden like the "pretty water" and the "play room".
And we left.
I didn't even ask Him for clear scans the next day. In all honesty, I didn't even think about it.
All I could focus on was how humbling the gifts of grace, love, and friendship are and how lucky we are.
I just thanked Him.
I prayed later for Him to continue to wrap His light and protection around Braden the next day for scans.
And Braden's scans continued to show "no evidence of disease".
Victory #4
A tremendous blessing and gift.
TREMENDOUS....
We still get to move forward...we get a green light for this next round of shots...
and we have hope that we can continue to allow Braden to live "quality time" for a bit...before the next storm hits.
We don't know what the next storm will be...
rapid progression of the mds...perhaps rapidly enough we would not get to do transplant, death by transplant or debilitating effects of transplant changing his quality of life, the neuroblastoma waking up which would disqualify him from transplant (the only cure), transplant being successful to only be met with an immune system that is not trained to keep neuroblastoma quiet so the neuroblastoma comes back and kills him, we don't know....
Everything must align perfectly.
It's going to take a lot of hope, it's going to take a miracle...
But for now...we are just grateful for our blessings.
Each day, we get to choose how we approach life.
We choose detours...
Hope...
Love...
and Gratitude!!!
Wind chimes just don't matter!
Let them go....
And fight to live with a thankful heart for blessings that surround you.
Even in the darkest of storms...
we can find something to be grateful for....
And WE have a billion blessings to be grateful for even in the midst of our dark storm.
Most notably, a NINE year old who leads the charge and a TEN year old we love very much!
TAKE THAT cANCER!!
The car didn't start and we have to get some place now, the grocery store is out of our favorite potato chips that were on sale, all of those little annoying things life throws at us on numerous, inconvenient, "bad timing" occasions.
We all do it...all of us at some point...
Even me! More often than I care to admit.
I also admit that other's negativity and ridiculousness becomes a source of amusement to me! Some things, some people, some situations are so wacky they can only call for bold, brazen, and hysterical laughter at their real insignificance.
Some people complain the majority of the time for the majority of reasons and seem to have little to say to convey gratitude. And a few "cherished" people seem to actually enjoy sharing the complaints and the fight against looking at the things that are going well in life.
For whatever reason, they enjoy the drama.
And that, honestly, make me sick...
and frustrated...
and very, very mad.
Negative things like posting on a neighborhood association site that someone's wind chimes are too loud and they bother you, which is then responded to by those in the hood who "chime" in and defend their inalienable right to have wind chimes that make them happy.
And you can imagine the responses to that and the firestorm that was created on this site...
Again...
Wind chimes!
Yup, this is a real story...not just a hypothetical example....it's not from my neighborhood (our neighborhood is AWESOME) rather my friend, Christine's neighborhood a few years ago.
Well, Christine jumped in on the conversation and gave them our story and the story of childhood cancer and how perspective might be a good thing to have with regard to wind chimes.
She told them wind chimes really weren't something worth all of the venom they were spewing at one another...threats of lawsuits and anger frothing from their fingertips and mouths as they spoke in whispers to others outside the computer keyboard.
And it quieted 99.9% of the drama...but there was still one "small" person who decided she had to respond and again proclaim her right to fight for whatever side of the debate she was on at the time.
You can't fix crazy and selfish...you just have to remind them of perspective, offer them the exposure to their craziness and selfishness, and then leave the poison behind and walk away from that. Let them be miserable by themselves because they thrive having a platform to debate and defend their craziness and selfishness.
And then hope and pray for them that some day, they will have "enough". For my blog about that...visit http://deliecehofen.blogspot.com/2013_03_14_archive.html
Braden and I just got home from Philly where he had labs and scans. We cannot "scan" for his pre-leukemia, but we have to scan for his neuroblastoma.
This is the longest period of time he has ever been off treatment for neuroblastoma. There's nothing we can give him for that right now because he has shown he's in a second remission for over 2 years and the treatments we were doing to clean up any dormant cells cannot be given due to his treatment induced pre-leukemia.
And...the neuroblastoma has got to remain in remission if he can eventually have a bone marrow transplant (which we are delaying because it could kill him OR leave him with such debilitating effects he wouldn't have a good quality of life after).
Oh...and because if we have taught his body to have an immunity for any of the remaining cells (to keep them dormant) once we do the bone marrow transplant, the neuroblastoma will rise back up again and he will once again be faced with "no known cure".
To say I had scanxiety about this visit doesn't quite do the feeling justice. Hope exists, but it only exists if the neuroblastoma stays quiet and if the transplant works perfectly and if we have REALLY killed every single neuroblastoma cell in his body so it doesn't come back.
Not likely that is all going to align.
So we are giving him 21 shots over 7 days, every three weeks to try to slow the progression of his pre-leukemia. Again, the only cure is a bone marrow transplant.
We know that our first sign that the shots are working to slow the progression of his disease will be his platelets not getting lower...and perhaps...PERHAPS...even rising a little.
Braden's platelets (the cells that are responsible for clotting your blood) were at 64,000 when he was diagnosed with the pre-leukemia (mds). Before round one of shots, they had fallen to 45,000 which was very scary because that could indicate progression of disease...and once it progresses such that his mds cells are at a large percentage, we have GOT to do bone marrow transplant to try to save him.
Our first stop in Philly was for labs at clinic. And Braden got to see his beloved Maggie...our nurse there. He ADORES Maggie!! And after flirting for some time, he ran into her arms, wrapped her in the tightest hug and gave her a kiss on the cheek.
Victory number one!
His platelet count (after two rounds of shots) was at 82,000!! When the sedation nurse (who I made find his counts a half hour after our clinic visit) told me and I nearly gave her the same reception Braden had given Maggie!
Victory number two!
Maybe....and perhaps we can even say "likely"...we are slowing the mds down with these shots.
That is AMAZING given Braden has had treatments for 5.5 years and his body has been through so much and his cancer cells have learned to adapt and mutate quickly to continue to grow.
The next day, we would have scans for the neuroblastoma to see if it remained quiet.
I know..there's a lot to keep track of...and each factor is a crapfest in itself. None of this is good news...it's all very bad...but we have a very small glimmer of hope at the end of the tunnel that is shining through.
And...our appointments had been on time that day and we got out of CHOP (Children's Hospital of Philadelphia) 40 minutes after our last appointment.
And THAT friends...NEVER happens!! We've waited for over 5 hours of his MIBG injection to arrive before.
Victory #3.
Now we had about 3 hours to "play" before 5:00 when everything closed.
So the afternoon we got the good platelet results, we decided to go to what Braden calls "the play room"...the Ben Franklin Institute. The Cathedral of Saints Peter and Paul is directly across Logan Square's "pretty water" from it.
It is impressive from the outside and after 4 years of traveling to Philly at least every 3 months, I had never been inside.
I decided that today...we were going in.
We walked past the row of homeless people who had an encampment beside the fence overlooking the highway. We walked past the drug dealers having an argument on the grass of Logan Square, we walked past the distraught people sitting on the benches contemplating life, we walked past the many tourists taking pictures at the fountain....
We opened the door and could immediately see into the massive worship space.
And we sat in the back pew...and my breath was just taken away by the beauty of this cathedral. It was absolutely amazing.
And I simply thanked God.
I thanked Him for our oncology teams in KC and Philly who we love beyond words, I thanked Him for platelets at 82,000. I thanked Him for time to play that afternoon, I thanked Him that we had a home to return to with our "Daddy" and "Zachy", I thanked Him that we were blessed to have friends who have helped us so we can afford to travel to Philly to get the best neuroblastoma team in the world (in my opinion) to work with us, I thanked Him for safety, and I thanked Him for all that amazed and delighted Braden like the "pretty water" and the "play room".
And we left.
I didn't even ask Him for clear scans the next day. In all honesty, I didn't even think about it.
All I could focus on was how humbling the gifts of grace, love, and friendship are and how lucky we are.
I just thanked Him.
I prayed later for Him to continue to wrap His light and protection around Braden the next day for scans.
And Braden's scans continued to show "no evidence of disease".
Victory #4
A tremendous blessing and gift.
TREMENDOUS....
We still get to move forward...we get a green light for this next round of shots...
and we have hope that we can continue to allow Braden to live "quality time" for a bit...before the next storm hits.
We don't know what the next storm will be...
rapid progression of the mds...perhaps rapidly enough we would not get to do transplant, death by transplant or debilitating effects of transplant changing his quality of life, the neuroblastoma waking up which would disqualify him from transplant (the only cure), transplant being successful to only be met with an immune system that is not trained to keep neuroblastoma quiet so the neuroblastoma comes back and kills him, we don't know....
Everything must align perfectly.
It's going to take a lot of hope, it's going to take a miracle...
But for now...we are just grateful for our blessings.
Each day, we get to choose how we approach life.
We choose detours...
Hope...
Love...
and Gratitude!!!
Wind chimes just don't matter!
Let them go....
And fight to live with a thankful heart for blessings that surround you.
Even in the darkest of storms...
we can find something to be grateful for....
And WE have a billion blessings to be grateful for even in the midst of our dark storm.
Most notably, a NINE year old who leads the charge and a TEN year old we love very much!
TAKE THAT cANCER!!
 |
| My friend Christine and me (my hair just started coming in after chemo) with our wind chimes a friend gave us! |
Wednesday, September 11, 2013
God Speaks Autism...
I've always contended that God "speaks" autism.
I knew that God knew about Braden, but I didn't know that Braden knew about God. With his autism, he doesn't understand abstract concept..things must be concrete and literal.
I knew God would protect him and that He loved him more than even I do, but my heart wanted Braden to love God as well.
Then one day years ago, when he was about to spike a fever which would have landed us in the ER again with a possible admit, I took out a special cloth that had been blessed, and placed it on Braden's head. I had never shown him the cloth but I had placed it on his abdomen frequently and prayed for his tumor there to go away.
I didn't really believe the cloth had any "magical powers", but I figured...
why not? Can't hurt!!
Braden felt the cloth on his head and pulled it from my hand. He grasped it and without hesitation said,
"Oh...Hi God!"
I didn't even know he knew the word God.
My entire body filled with goosebumps.
And at that moment...I knew...
God speaks autism.
They have a very close relationship and they "know" each other in ways I could never understand or explain.
Braden knows and loves God.
And God "speaks" to Braden through his heart.
Well tonight, Braden was in bed. He had left his "first tiger"...his favorite of his stuff toy tigers (he now has nine for nine years old). Each is named in cardinal order.
"First Tiger" was indeed the first tiger he received.
And he NEVER sleeps or travels or has scans or goes to clinic or long car rides without "First Tiger".
First Tiger was downstairs in the exact spot he told me I would find him and as I walked back into my room I was shocked to see Braden flipping through the pages of my Bible.
My first reaction was "NO!" because I was afraid he would rip the delicate pages. So I asked him to give it to me.
He obliged, very sweetly and then I realized my mistake.
I handed the Bible back to Braden and said, "Open it honey...what page do you want to read".
He took the closed book and opened it to a page.
I then asked him to point to the words he wanted me to read.
He said, "Right here"...
The words were from Psalm 105 verse 4 and 5...
"Look to the Lord and his strength;
seek his face always.
Remember the wonders he has done,
his miracles, and the judgments he
pronounced."
Those same goosebumps are back.
God speaks autism.
And tonight...God spoke to my heart through Braden...
and gave me HOPE...
Through FAITH!
TAKE THAT cANCER!
I knew that God knew about Braden, but I didn't know that Braden knew about God. With his autism, he doesn't understand abstract concept..things must be concrete and literal.
I knew God would protect him and that He loved him more than even I do, but my heart wanted Braden to love God as well.
Then one day years ago, when he was about to spike a fever which would have landed us in the ER again with a possible admit, I took out a special cloth that had been blessed, and placed it on Braden's head. I had never shown him the cloth but I had placed it on his abdomen frequently and prayed for his tumor there to go away.
I didn't really believe the cloth had any "magical powers", but I figured...
why not? Can't hurt!!
Braden felt the cloth on his head and pulled it from my hand. He grasped it and without hesitation said,
"Oh...Hi God!"
I didn't even know he knew the word God.
My entire body filled with goosebumps.
And at that moment...I knew...
God speaks autism.
They have a very close relationship and they "know" each other in ways I could never understand or explain.
Braden knows and loves God.
And God "speaks" to Braden through his heart.
Well tonight, Braden was in bed. He had left his "first tiger"...his favorite of his stuff toy tigers (he now has nine for nine years old). Each is named in cardinal order.
"First Tiger" was indeed the first tiger he received.
And he NEVER sleeps or travels or has scans or goes to clinic or long car rides without "First Tiger".
First Tiger was downstairs in the exact spot he told me I would find him and as I walked back into my room I was shocked to see Braden flipping through the pages of my Bible.
My first reaction was "NO!" because I was afraid he would rip the delicate pages. So I asked him to give it to me.
He obliged, very sweetly and then I realized my mistake.
I handed the Bible back to Braden and said, "Open it honey...what page do you want to read".
He took the closed book and opened it to a page.
I then asked him to point to the words he wanted me to read.
He said, "Right here"...
The words were from Psalm 105 verse 4 and 5...
"Look to the Lord and his strength;
seek his face always.
Remember the wonders he has done,
his miracles, and the judgments he
pronounced."
Those same goosebumps are back.
God speaks autism.
And tonight...God spoke to my heart through Braden...
and gave me HOPE...
Through FAITH!
TAKE THAT cANCER!
Sunday, September 8, 2013
BIRTHDAY BOY!!
September 9 is a PRETTY BIG DEAL DAY at Hofen Centra!!
There has got to be some magic in Braden's birthday date and age!
He is 9 years old on 9-9!
TAKE THAT cANCER!!
I think it's the kind of magic like the stuff in "Frosty the Snowman"...
Well...without a black magician's hat...
...and a rabbit (oh I hope no one brings him a rabbit for his birthday now! LOL!)
We have so many dates that have special meaning and values. Miranda was born on 8-1-01, Zach 4-3-03, Braden 9-9-04, his new diagnosis day was on our anniversary...every single big thing has been on a special day...scans always line up with special days as well!
It's pretty remarkable!!
So to turn 9 on 9-9 seems like it's important for some reason. It has to be good mojo of some sort!!
It's got to be magical!!
We want to see double digits and beyond. To be honest, I didn't think we would see this one when we got the diagnosis on July 8.
But he is here, he had a big party with his friends yesterday. He ran and climbed and bounced and jumped and partied for over 2 hours.
And then he went to the Royals Game to meet a very special baseball team, The Bulldogs, who were our Hope Hits winning team.
And...he got to see the 2014 Royals Calendars for Sale at Kauffman Stadium...oh and Braden and George Brett on the Crown!!
and on Monday, he is turning 9!
Talk about blessed!!!
The reality behind this birthday being likely his last still hits us very hard, and we are going to celebrate it like crazy as a result.
We've done this before.
He wasn't supposed to get 4...then his relapse diagnosis came a month before his 5th birthday...
That was supposed to be the last.
He showed cANCER who is boss...and he is here to turn 9.
And I believe in miracles!!
We are NOT giving up yet!!!
I'm sticking with "Hopeful Realist" to describe our mood overall.
But...September 9 the mood is ONLY
HAPPY
GRATEFUL
HUMBLE
and in complete AWE of God's glory and blessing!
TAKE THAT cANCER!!!
BRADEN WINS!!!!!
...and so does his new fishie "Darlin" :) Thanks Ms. Kim!! (you stinker!)
There has got to be some magic in Braden's birthday date and age!
He is 9 years old on 9-9!
TAKE THAT cANCER!!
I think it's the kind of magic like the stuff in "Frosty the Snowman"...
Well...without a black magician's hat...
...and a rabbit (oh I hope no one brings him a rabbit for his birthday now! LOL!)
We have so many dates that have special meaning and values. Miranda was born on 8-1-01, Zach 4-3-03, Braden 9-9-04, his new diagnosis day was on our anniversary...every single big thing has been on a special day...scans always line up with special days as well!
It's pretty remarkable!!
So to turn 9 on 9-9 seems like it's important for some reason. It has to be good mojo of some sort!!
It's got to be magical!!
We want to see double digits and beyond. To be honest, I didn't think we would see this one when we got the diagnosis on July 8.
But he is here, he had a big party with his friends yesterday. He ran and climbed and bounced and jumped and partied for over 2 hours.
And then he went to the Royals Game to meet a very special baseball team, The Bulldogs, who were our Hope Hits winning team.
And...he got to see the 2014 Royals Calendars for Sale at Kauffman Stadium...oh and Braden and George Brett on the Crown!!
and on Monday, he is turning 9!
Talk about blessed!!!
The reality behind this birthday being likely his last still hits us very hard, and we are going to celebrate it like crazy as a result.
We've done this before.
He wasn't supposed to get 4...then his relapse diagnosis came a month before his 5th birthday...
That was supposed to be the last.
He showed cANCER who is boss...and he is here to turn 9.
And I believe in miracles!!
We are NOT giving up yet!!!
I'm sticking with "Hopeful Realist" to describe our mood overall.
But...September 9 the mood is ONLY
HAPPY
GRATEFUL
HUMBLE
and in complete AWE of God's glory and blessing!
TAKE THAT cANCER!!!
BRADEN WINS!!!!!
...and so does his new fishie "Darlin" :) Thanks Ms. Kim!! (you stinker!)
Monday, August 26, 2013
Pain is pain...
So things in our lives have been a little crazy...and sad...and fearful...and worriesome...and all shades of crappy....
Mixed with overwhelming joy and love and happiness...
It's the roller coaster ride of a family who has a child with cANCER.
Up and down and twirly and swirly....then you throw up...then you laugh...
but you always want off the ride.
This is our third time on the ride.
Braden's third cANCER battle.
I didn't sign up for this shit...and I didn't get in the line...
I'm pretty sure I was thrown onto the ride kicking and screaming.
Needless to say, it's been chaotic and overwhelming.
Well, I have had many conversations with my friends in which I've learned that they, too, have had their own roller coaster rides. Filled with their own twirly swirly dips and twists, throwing up, and wanting off.
But they haven't said anything to me.
When I do finally get them to come clean, they apologize profusely and say, "You have SO much going on right now...I didn't want to bother you and I didn't want to make you more sad".
So let's just talk about that because it's sort of an taboo thing to talk about in society. Nobody really knows what to do and how to handle situations like mine. I've always believed open communication and talking about the elephant in the room is the way to go.
I can't speak for everyone in similar shoes, but this is what I need and want my friends to know! :)
First, NOTHING can make me more sad about my own stuff. Nothing. Once again my son has overwhelming odds of dying or surviving only to have devastating side effects which could result in him not having "quality time".
So nothing can EVER make me more sad about that. I have crossed over into the infinity to the power of infinity, plus one level of sadness.
I'm kicking ASS in the Sadness Olympics!
If there were such a thing.... LOL!
BUT....it doesn't mean that I can't empathize with someone else's sadness. And it doesn't mean I can't be helpful with someone else's "stuff".
I'm not saying I will be helpful...I'm still me and quite often a complete mess and I often insert my foot into my mouth...
(figuratively)
Unless I have had entirely too much tequila...
Then all bets are off.
But I want to try.
I want to be a part of my friends' lives, I want to hear from other cANCER moms, and I want to try to help find resources and help for them too.
It actually helps me to help someone else. It gives me something that I can try to control and result in a better outcome for someone else.
I want to be a part of my friends' lives.
It fills my heart and soul to TRY to help.
So let me.
Many of my friends have apologized for what they are worried, stressed, sad, fearful about because they think what they are going through is not nearly as big as what I'm going through.
My response is always the same...
Anyone who feels the need to quantify sadness, worry, stress, and fear is not thinking. And, frankly, not a very good person.
Pain is pain.
Fear is fear.
Sadness is sadness
Worry is worry.
Heartbreak is heartbreak.
There is absolutely NO need to quantify, no need to measure anyone's pain against someone else's.
So please don't feel the need to quantify and compare.
Pain is pain.
Period!
I do not believe it is disrespectful or insensitive to tell me about your personal crapfest. And, I may cry with you...and that's okay, I would have done that before this cANCER mess so I'll probably do it now.
I feel isolated and shut out and like I'm a bad friend when I am not a part of your lives, even the bad stuff, and even with my crapfest.
So stop making me feel worse about myself by not sharing!! ;) LOL!!
My heart is big enough to handle your happiness too. Yes...it really is. So when you become pregnant, your child reaches a major milestone, you get a new job, you are going to Hawaii...whatever it is... (and those are all made up as I type but if you are going to Hawaii...I want to go in your suitcase please) :)
I can take it!
I can actually be happy for you, even on my really crappy days. I WANT to be happy for you and I want to celebrate with you. I need things to smile about also!
Just treat me like you did before the new diagnosis. I'm still me. I have another round on the roller coaster from hell but being friends, sharing your lives...gives me a brief moment on the roller coaster of straight, slow track where I can focus on something other than when the next big dip is coming that is going to make me throw up.
All of us have friends who go through hard times. The best advice is ASK your friend how they want to be treated...do they want to hear your stuff or not...
and for those of you who didn't ask me, but heard it anyway...now you know! :)
My friends are my family. I love you all and we will get through my roller coaster and your roller coasters by being there for each other.
It's what friendship is all about.
Love you!
Deliece
Mixed with overwhelming joy and love and happiness...
It's the roller coaster ride of a family who has a child with cANCER.
Up and down and twirly and swirly....then you throw up...then you laugh...
but you always want off the ride.
This is our third time on the ride.
Braden's third cANCER battle.
I didn't sign up for this shit...and I didn't get in the line...
I'm pretty sure I was thrown onto the ride kicking and screaming.
Needless to say, it's been chaotic and overwhelming.
Well, I have had many conversations with my friends in which I've learned that they, too, have had their own roller coaster rides. Filled with their own twirly swirly dips and twists, throwing up, and wanting off.
But they haven't said anything to me.
When I do finally get them to come clean, they apologize profusely and say, "You have SO much going on right now...I didn't want to bother you and I didn't want to make you more sad".
So let's just talk about that because it's sort of an taboo thing to talk about in society. Nobody really knows what to do and how to handle situations like mine. I've always believed open communication and talking about the elephant in the room is the way to go.
I can't speak for everyone in similar shoes, but this is what I need and want my friends to know! :)
First, NOTHING can make me more sad about my own stuff. Nothing. Once again my son has overwhelming odds of dying or surviving only to have devastating side effects which could result in him not having "quality time".
So nothing can EVER make me more sad about that. I have crossed over into the infinity to the power of infinity, plus one level of sadness.
I'm kicking ASS in the Sadness Olympics!
If there were such a thing.... LOL!
BUT....it doesn't mean that I can't empathize with someone else's sadness. And it doesn't mean I can't be helpful with someone else's "stuff".
I'm not saying I will be helpful...I'm still me and quite often a complete mess and I often insert my foot into my mouth...
(figuratively)
Unless I have had entirely too much tequila...
Then all bets are off.
But I want to try.
I want to be a part of my friends' lives, I want to hear from other cANCER moms, and I want to try to help find resources and help for them too.
It actually helps me to help someone else. It gives me something that I can try to control and result in a better outcome for someone else.
I want to be a part of my friends' lives.
It fills my heart and soul to TRY to help.
So let me.
Many of my friends have apologized for what they are worried, stressed, sad, fearful about because they think what they are going through is not nearly as big as what I'm going through.
My response is always the same...
Anyone who feels the need to quantify sadness, worry, stress, and fear is not thinking. And, frankly, not a very good person.
Pain is pain.
Fear is fear.
Sadness is sadness
Worry is worry.
Heartbreak is heartbreak.
There is absolutely NO need to quantify, no need to measure anyone's pain against someone else's.
So please don't feel the need to quantify and compare.
Pain is pain.
Period!
I do not believe it is disrespectful or insensitive to tell me about your personal crapfest. And, I may cry with you...and that's okay, I would have done that before this cANCER mess so I'll probably do it now.
I feel isolated and shut out and like I'm a bad friend when I am not a part of your lives, even the bad stuff, and even with my crapfest.
So stop making me feel worse about myself by not sharing!! ;) LOL!!
My heart is big enough to handle your happiness too. Yes...it really is. So when you become pregnant, your child reaches a major milestone, you get a new job, you are going to Hawaii...whatever it is... (and those are all made up as I type but if you are going to Hawaii...I want to go in your suitcase please) :)
I can take it!
I can actually be happy for you, even on my really crappy days. I WANT to be happy for you and I want to celebrate with you. I need things to smile about also!
Just treat me like you did before the new diagnosis. I'm still me. I have another round on the roller coaster from hell but being friends, sharing your lives...gives me a brief moment on the roller coaster of straight, slow track where I can focus on something other than when the next big dip is coming that is going to make me throw up.
All of us have friends who go through hard times. The best advice is ASK your friend how they want to be treated...do they want to hear your stuff or not...
and for those of you who didn't ask me, but heard it anyway...now you know! :)
My friends are my family. I love you all and we will get through my roller coaster and your roller coasters by being there for each other.
It's what friendship is all about.
Love you!
Deliece
Wednesday, August 21, 2013
Renewing a Driver's License 101...
So I got a card in the mail two days ago notifying me that I needed to renew my driver's license.
I was afraid. Very afraid.
The news has been covering this ridiculously inefficient system and the long waits it has produced for several months now after the State of Kansas put in this brand new "whoopty doo awesome" system. It has been a complete cluster.
Awesome! Couldn't WAIT to go!
My license doesn't expire until October but I learned long ago with this cANCER mess, you do stuff now because later might be a different situation when you CAN'T go.
That, and I'm a type A personality. I cannot STAND to have things on my "to do list". ;)
Okay, okay.... to be completely honest, you have to bring the little postcard they send you in order to renew and I was certain that I would not be able to keep track of it for that long. :) And I had no idea what they would do if I lost it...I think that's an automatic "go to jail" penalty. LOL!
I was supposed to bring the postcard (that was mailed to me by the State with my address on the front), my old driver's license, money to pay the fee, and proof of residency---which could be a piece of mail that had my address on it from a government agency.
Hmmm...seemed redundant because the government mailed me the postcard I was supposed to bring....
?????????
I followed the rules and found my vehicle registration paperwork and had it in my purse ready to go to show proof of residency for fear of it being like hitting the wrong spot on Chutes and Ladders and sliding all the way back to the beginning...or hitting "go to jail" in Monopoly...well the old Monopoly...I hear the new one doesn't have that any more. Because why again??? It's a freaking GAME...not real life... SHEESH people, stop getting your undies in a bunch over going to fictitious jail in a BOARD GAME!!!
Insert eye roll and sigh...
Meanwhile, back to the DL Bureau, part of our "new system" is an online login system that allows you to save your spot in line and then you just go to the DL Bureau at your designated time.
Slick!
SO the system opens at 7:00 am. Tuesday morning, I logged in at 7:10 and it was going to be a 5 hour 11 minute wait.
WOW!!
That wait line filled up fast!!
Five hours later wasn't going to land at a time that I could be there so I decided to login FIRST THING this morning.
At 6:58, I started trying...kept pushing refresh every 10 seconds or so.
I got in just as it "opened" online at 7:00...the wait time was already 1 hour and 36 minutes.
Seems like I'm not the only one who learned a lesson...the people who got in line on Tuesday probably figured it out on Friday when they missed it (they are closed on Monday)...and all of us Tuesday losers figured it out for Wednesday...
The computer screen said they would text me when I was first in line.
(it is several hours after I left the driver's license bureau and I still have not received a text to tell me I'm next in line...note to self, don't rely on that system). ;)
Okee doke...I'm on it...8:36.
Actually, I figured I better be there a little early in case they called my number and I wasn't there and I got bumped out of line and had to wait 7 hours because "I snoozed and I loozed".
SO.....Brian took the boys to school for me so I could make it a few minutes early.
You know...in the event they were running ahead of schedule.
BWAHHAHHHAHHHAHHAAAAAAAAAAAAAAA!
I walked in and it wasn't busy at all!! Just a few people sitting in a sea of chairs.
AWESOME!! Maybe I WILL get in early?
BWAHHAHHHAHHHAHHAAAAAAAAAAAAAAA! Again...
I then noticed the scrolling monitor, I found my number and I had a 32 minute wait. No biggie...at least I hadn't missed it.
Then I hear this electronic "ding" and a voice say, "Now serving number "1234" at desk 2".
It was an annoying announcement system. That pseudo-sweet voice and that damn ding every minute or so. I wanted to find the electronic voice and smack the crap out of it! :) It was the same calm voice that I remember hearing Nurse Ratchett from "One Flew Over The Cuckoo's Nest" use at med time.
I was wishing it was med time....or maybe mimosa time.
I also took note that there were 9 desks...only four are actually manned with employees.
Now I'm no Einstein....
But it would seem that when the news has done multiple stories about how inefficient the driver's license bureau is with this "new system" the state is using, you have a 5 hour wait if you log on 10 minutes after the system opens, and before 9:00 AM, every person who entered to sign in in person was being told they had reached their max of people they can handle for the day and they would have to come back the next day...or whenever... you MIGHT want to look at the system...
and fix it...
Perhaps even man all 9 of those desks???
Just a thought... :)
I'm sure it's all funding related but really....
People take off work, rearrange family schedules and then have to do it again because only 4 desks are open?
I guess "open" is a relative term.
I need a job like that...one that makes no apologies just tells you that you are too late to get in two hours after opening.
I felt the worst for the elderly couples who clearly did not understand how to log in on the computer to save a spot, had gotten all gussied up to come into town and had to go home. You could FEEL the confusion on their faces as they sought to understand what they had to do in order to get in tomorrow...
And I felt sorry for the Driver's License Bureau lady who had to tell each and every one of them that they were too late...unless today was their birthday, she could have them file for a 45 day extension in that event.
She did not receive a lot of love and appreciation.
I understand that.
But it wasn't HER fault...she was the messenger for a broken (and stupid) system. I made a note that I would not be applying to work at the DL Bureau anytime soon. Parts of her butt were being bit off with every person she turned away and the ones that remained silent shot daggers with their eyes.
Again...perhaps manning those 9 desks would help?? I'm thinking like 100 desks...that ought to do it. :)
Finally, my number was called and proceeded to desk 7.
I kept telling myself to just SHUT UP until I got my license in my hands...just SHUT UP!!!
She asked for my postcard...good girl, I had it...and I handed her my driver's license...yay me. I waited to see what she would do for proof of residency. She just asked if my address was the same as it was on the postcard, I said yes and she just kept going through the list of stuff we had to do to get the license.
AHA!!!!
SO the little yellow postcard DOES work for proof of residency!!!?
But why would they make such a big deal about "proof of residency"... Reminded myself to just SHUT UP until I had the license in my hand.
That was hard for me to do. ;)
Then I noticed an Hispanic family a few desks down from me. I noticed them because I could see the flailing arms of the lady at their desk and I could hear her getting louder and louder.
She kept explaining about "proof of residency" and the yellow postcard. From the conversation, which I was NOT trying to overhear a half mile away from them but couldn't miss due to the volume, they didn't have their card or proof of residency. I was actually glad to hear that because if they had their yellow card but had to provide proof when I didn't have to with MY yellow card and no proof, I was going to be pissed.
Whew...
But when they didn't understand what she was saying, she got louder...and louder...and louder...
Again, I'm no Einstein....
but YELLING in English to someone who doesn't understand much English is PROBABLY not going to make them understand English.
Somebody stepped in and helped and they nodded and left....
Guess they get to come back and try it again tomorrow with all the others who got turned away. I felt so bad for them!
My attention was drawn back to my desk lady when she asked me if the information on my current license was still correct...that included height and weight...
(Damnit, this was the part I wasn't looking forward to because last time I got my license I had stretched the truth as well so I'm like two weight gains into a weight listed on my license).
In my defense, maybe I will lose those 3 pounds...and if I lost 4, I would actually weigh LESS than what was listed on my license...then what? I'm NOT going back to this ridiculous line to make my weight a pound less....well...maybe five pounds less but not ONE. ;)
SO I nodded in affirmation that it was...
'ish...
I'm not proud of it. But it was necessary to avoid that long line again when I lose those four pounds. LOL!
I'm just trying to help the government out!
So we got done, I smiled for the camera, and she clipped my old license and handed me a paper printout and told me my real license would come in 60 days in the mail.
Damn....I wasn't in the clear yet to open my mouth, but even though I didn't have the actual license in my hand, I had to ask.
"So...I'm curious...why ask for proof of residency if the yellow card words for proof of residency since it was mailed to me at my address by a government agency?"
She smiled and said it was because some people go online and change their addresses to update it and any change of address would have to be verified.
I saw a lot of holes in that, but I didn't have the actual license in my hand so I shut up, thanked her and walked away.
And as I was walking away, a couple pushing a baby stroller stepped out in front of me. The wife said, "So...did you miss it..did they call you when we weren't here?"
The husband shook his head yes and said they had to go over to another desk to figure out what to do now.
The f-bomb may have been spoken by the mom...a few times.
I giggled and the mom turned around to apologize...
I told her I wasn't offended...
I understood.
Completely!
I am now heading for that mimosa.
I was afraid. Very afraid.
The news has been covering this ridiculously inefficient system and the long waits it has produced for several months now after the State of Kansas put in this brand new "whoopty doo awesome" system. It has been a complete cluster.
Awesome! Couldn't WAIT to go!
My license doesn't expire until October but I learned long ago with this cANCER mess, you do stuff now because later might be a different situation when you CAN'T go.
That, and I'm a type A personality. I cannot STAND to have things on my "to do list". ;)
Okay, okay.... to be completely honest, you have to bring the little postcard they send you in order to renew and I was certain that I would not be able to keep track of it for that long. :) And I had no idea what they would do if I lost it...I think that's an automatic "go to jail" penalty. LOL!
I was supposed to bring the postcard (that was mailed to me by the State with my address on the front), my old driver's license, money to pay the fee, and proof of residency---which could be a piece of mail that had my address on it from a government agency.
Hmmm...seemed redundant because the government mailed me the postcard I was supposed to bring....
?????????
I followed the rules and found my vehicle registration paperwork and had it in my purse ready to go to show proof of residency for fear of it being like hitting the wrong spot on Chutes and Ladders and sliding all the way back to the beginning...or hitting "go to jail" in Monopoly...well the old Monopoly...I hear the new one doesn't have that any more. Because why again??? It's a freaking GAME...not real life... SHEESH people, stop getting your undies in a bunch over going to fictitious jail in a BOARD GAME!!!
Insert eye roll and sigh...
Meanwhile, back to the DL Bureau, part of our "new system" is an online login system that allows you to save your spot in line and then you just go to the DL Bureau at your designated time.
Slick!
SO the system opens at 7:00 am. Tuesday morning, I logged in at 7:10 and it was going to be a 5 hour 11 minute wait.
WOW!!
That wait line filled up fast!!
Five hours later wasn't going to land at a time that I could be there so I decided to login FIRST THING this morning.
At 6:58, I started trying...kept pushing refresh every 10 seconds or so.
I got in just as it "opened" online at 7:00...the wait time was already 1 hour and 36 minutes.
Seems like I'm not the only one who learned a lesson...the people who got in line on Tuesday probably figured it out on Friday when they missed it (they are closed on Monday)...and all of us Tuesday losers figured it out for Wednesday...
The computer screen said they would text me when I was first in line.
(it is several hours after I left the driver's license bureau and I still have not received a text to tell me I'm next in line...note to self, don't rely on that system). ;)
Okee doke...I'm on it...8:36.
Actually, I figured I better be there a little early in case they called my number and I wasn't there and I got bumped out of line and had to wait 7 hours because "I snoozed and I loozed".
SO.....Brian took the boys to school for me so I could make it a few minutes early.
You know...in the event they were running ahead of schedule.
BWAHHAHHHAHHHAHHAAAAAAAAAAAAAAA!
I walked in and it wasn't busy at all!! Just a few people sitting in a sea of chairs.
AWESOME!! Maybe I WILL get in early?
BWAHHAHHHAHHHAHHAAAAAAAAAAAAAAA! Again...
I then noticed the scrolling monitor, I found my number and I had a 32 minute wait. No biggie...at least I hadn't missed it.
Then I hear this electronic "ding" and a voice say, "Now serving number "1234" at desk 2".
It was an annoying announcement system. That pseudo-sweet voice and that damn ding every minute or so. I wanted to find the electronic voice and smack the crap out of it! :) It was the same calm voice that I remember hearing Nurse Ratchett from "One Flew Over The Cuckoo's Nest" use at med time.
I was wishing it was med time....or maybe mimosa time.
I also took note that there were 9 desks...only four are actually manned with employees.
Now I'm no Einstein....
But it would seem that when the news has done multiple stories about how inefficient the driver's license bureau is with this "new system" the state is using, you have a 5 hour wait if you log on 10 minutes after the system opens, and before 9:00 AM, every person who entered to sign in in person was being told they had reached their max of people they can handle for the day and they would have to come back the next day...or whenever... you MIGHT want to look at the system...
and fix it...
Perhaps even man all 9 of those desks???
Just a thought... :)
I'm sure it's all funding related but really....
People take off work, rearrange family schedules and then have to do it again because only 4 desks are open?
I guess "open" is a relative term.
I need a job like that...one that makes no apologies just tells you that you are too late to get in two hours after opening.
I felt the worst for the elderly couples who clearly did not understand how to log in on the computer to save a spot, had gotten all gussied up to come into town and had to go home. You could FEEL the confusion on their faces as they sought to understand what they had to do in order to get in tomorrow...
And I felt sorry for the Driver's License Bureau lady who had to tell each and every one of them that they were too late...unless today was their birthday, she could have them file for a 45 day extension in that event.
She did not receive a lot of love and appreciation.
I understand that.
But it wasn't HER fault...she was the messenger for a broken (and stupid) system. I made a note that I would not be applying to work at the DL Bureau anytime soon. Parts of her butt were being bit off with every person she turned away and the ones that remained silent shot daggers with their eyes.
Again...perhaps manning those 9 desks would help?? I'm thinking like 100 desks...that ought to do it. :)
Finally, my number was called and proceeded to desk 7.
I kept telling myself to just SHUT UP until I got my license in my hands...just SHUT UP!!!
She asked for my postcard...good girl, I had it...and I handed her my driver's license...yay me. I waited to see what she would do for proof of residency. She just asked if my address was the same as it was on the postcard, I said yes and she just kept going through the list of stuff we had to do to get the license.
AHA!!!!
SO the little yellow postcard DOES work for proof of residency!!!?
But why would they make such a big deal about "proof of residency"... Reminded myself to just SHUT UP until I had the license in my hand.
That was hard for me to do. ;)
Then I noticed an Hispanic family a few desks down from me. I noticed them because I could see the flailing arms of the lady at their desk and I could hear her getting louder and louder.
She kept explaining about "proof of residency" and the yellow postcard. From the conversation, which I was NOT trying to overhear a half mile away from them but couldn't miss due to the volume, they didn't have their card or proof of residency. I was actually glad to hear that because if they had their yellow card but had to provide proof when I didn't have to with MY yellow card and no proof, I was going to be pissed.
Whew...
But when they didn't understand what she was saying, she got louder...and louder...and louder...
Again, I'm no Einstein....
but YELLING in English to someone who doesn't understand much English is PROBABLY not going to make them understand English.
Somebody stepped in and helped and they nodded and left....
Guess they get to come back and try it again tomorrow with all the others who got turned away. I felt so bad for them!
My attention was drawn back to my desk lady when she asked me if the information on my current license was still correct...that included height and weight...
(Damnit, this was the part I wasn't looking forward to because last time I got my license I had stretched the truth as well so I'm like two weight gains into a weight listed on my license).
In my defense, maybe I will lose those 3 pounds...and if I lost 4, I would actually weigh LESS than what was listed on my license...then what? I'm NOT going back to this ridiculous line to make my weight a pound less....well...maybe five pounds less but not ONE. ;)
SO I nodded in affirmation that it was...
'ish...
I'm not proud of it. But it was necessary to avoid that long line again when I lose those four pounds. LOL!
I'm just trying to help the government out!
So we got done, I smiled for the camera, and she clipped my old license and handed me a paper printout and told me my real license would come in 60 days in the mail.
Damn....I wasn't in the clear yet to open my mouth, but even though I didn't have the actual license in my hand, I had to ask.
"So...I'm curious...why ask for proof of residency if the yellow card words for proof of residency since it was mailed to me at my address by a government agency?"
She smiled and said it was because some people go online and change their addresses to update it and any change of address would have to be verified.
I saw a lot of holes in that, but I didn't have the actual license in my hand so I shut up, thanked her and walked away.
And as I was walking away, a couple pushing a baby stroller stepped out in front of me. The wife said, "So...did you miss it..did they call you when we weren't here?"
The husband shook his head yes and said they had to go over to another desk to figure out what to do now.
The f-bomb may have been spoken by the mom...a few times.
I giggled and the mom turned around to apologize...
I told her I wasn't offended...
I understood.
Completely!
I am now heading for that mimosa.
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