His Status Updates

December 11, 2015
I am Craig Pruscha, friend to Alex and family
and the guy that started this campaign years
back. I just got off the phone with Abby and
felt the need to post my own update today.
Three years ago this all began and nothing
has been "normal" for this family since.
Tis the season and the need is as great as it has
ever been. It's hard to look at a child suffering from
cancer. I know because despite all of my efforts, the response has been nominal. I assure you these pictures and the story told here does not do the pain of it all justice. Abby keeps getting knocked down with life issues. Today it was a $400 brake job on her car and an IRS bill. I have known her for a long time and she is as resilient as they come, but imagine what it is like to endure this pain for a day and then multiply it and the bills times 3 years worth of days. If you are looking for a holiday good deed, I can think of few that warrant it like this one. Click the "Avengers Assemble" page on the left.

There is no minimum donation amount. You can also make your donations in person at my restaurants. Bistro Z or Mad Science Creamery, both in Sussex, WI.


June 18, 2015
Day 907 of leukemia
Day 3 of relapse treatment

It was pretty much the same today as
yesterday. We set sail early today with
"Tony the traveling Turtle", who plans to attend
all our treatments until the end of treatment or he
becomes deflated, whichever comes first.

Alex got his IV meds and took his oral meds like a champ, but that was nothing compared to how incredibly brave...brave isn't a big enough word... SUPERSTAR is better but still not big enough... For getting his dressing changed on his newly placed line on his chest. The whole area was still very tender and sore. There were a few tears, but he helped pull off the stickies and was so calm about it. He knows we have to keep it clean. One more day like today, then we go In For the long haul.

Keep hugging those babies. Life is precious. Think about that. Xoxo


June 15, 2015

I just got off of he phone with Alexzander's oncologist, who said that the first few days of Alex's treatment can be done outpatient because they aren't chemo drugs, but part of the clinical trial medication. So... We will still go in today to get his port removed and his central line placed, a bone marrow aspiration, and a spinal tap with intrathecal chemo.   Then, tomorrow, Wednesday, and Thursday we will drive to Milwaukee and get his medicine in the day hospital at MACC. Friday then will be our admit date. It's a lot of time in the car and hours on the road for the littles, but we get to sleep in our own beds just a few more nights.

June 13, 2015
We met with the oncology team on Thursday. We were presented with an opportunity to join in a clinical study that includes two additional drugs to standard treatment. These drugs are supposed to make the myeloid cells more susceptible to the chemo and die. This study must be started no less than 5 days since any other chemo drugs have been taken, and since Alex finished his oral steroid last Tuesday, we have to wait to start treatment a bit.

That being said, we will now being going into CHOW on Monday. Alex will then get his port removed and his central line placed. He will get a spinal tap with intrathecal chemo and another bone marrow aspirate.

At diagnosis two years ago, his marrow contained 80% blasts (cancer cells) if ALL. He has (as of Monday) 17% AML cells. This is a much more aggressive cancer and needs much more aggressive treatment. We don't know what his blast will be in his marrow this upcoming Monday, but I'm sure it will be higher. He is already becoming fatigued and not acting truly like himself.

During our meeting with his team, we were told that Alex's condition is very very rare. That there isn't much to compare him to. That there aren't any real comparable statistics to give. But that this was going to be very very difficult. We still don't know how or why this happened to our baby. Why he got cancer, not once, but twice. It's just not fair.

Again, if anyone wants to send him anything, he would appreciate it. He loves super heroes and has dreams of becoming a navy seal when he is grown.

Alexzander Klingbeil
1124 n watertown avenue
Jefferson wi
53549



Important links:
http://gogetfunding.com/the-iron-man-fund/

Www.deletebloodcancer.org

If you can donate one way or another, it helps. One dollar for the gas tank or a swab in the cheek for bone marrow registry to save a life. It literally take just a few minutes to get on the registry. I BEG everyone to get swabbed and help save lives.


June 10, 2015
It is with a heavy heart
that we report the following:

We have bad news. It seems that Alexzander's
leukemia has mutated. They don't know why.
They say it's very rare to happen. He has gone from
ALL Tcell to AML. (Please don't ask me to explain
 the difference, just research it if you please). This is
a much more aggressive leukemia. It has to be
treated more aggressively. Intense chemos.
and a bone marrow transplant once he reaches an
acceptable status to qualify. This will be the hardest part of this nightmare yet.

Alex will be inpatient at CHOW beginning this Friday. On Friday, he will receive a spinal tap with intrathecal chemo and get his chest port removed and replaced with a double lumen central line. He will stay inpatient for no less than 4 weeks. He will receive an array of heavy chemos. He will (ideally) then be off for a few days. Then back again for no less than four weeks. This cycle will continue until his bone marrow transplant.

A relapsed AML is very hard to treat. His dad and I are still trying to wrap our heads around all of this. He and I will be there with Alex every step of the way. Never leaving him alone in that hospital room.

All of this is information that we got today. Thursday brings us to a consultation with his oncology team to work out the details. His already serious disease just got even worse. Pray for our baby.

He loves mail, so I anyone wants to send him a card or a letter, please send to:

ALEX "THE IRONMAN"
1124 n Watertown ave
Jefferson WI 53549


Or

ALEX "THE IRONMAN"
505 w BLackhawk dr #2
Fort Atkinson WI


We will make sure it gets to him.

___________________________________________________________________________________

June 8, 2015
Getting ready for the day today with knots in my stomach the size of pumpkins. Blood work, chest X-ray, doctor evaluation, bone marrow biopsy and spinal tap. Waiting with a weighted heart. Need Prayers!


June 5, 2015
The news I have to share today comes with a heavy heart. For the last 2 1/2 years our son Alex has been battling with acute lymphocytic leukemia and we had every hope in the world that his initial treatments would be enough to keep this disgusting disease at bay. However yesterday's lab results showed us something different. Something horrific. There seems to be several immature cells in Alex's blood again which are more likely than not his leukemia returning. He fought strong in the last 2 1/2 years,and now the battle will start all over again. We go in Monday to the hospital for more tests including a bone marrow biopsy and another spinal tap. From there we will get a new plan to try and rid this nasty nasty disease from our little angel's body.


February 17, 2015
So after three weeks of concern and numbers that forced Abby to keep Alex home from school for three weeks and halt his chemo, I got this message today. Finally a little good news.
"CELLS RECOVERED!!!!! Alex's ANC is up to 1680!!! Just a fast update from the nurse. Waiting for more information with a plan from the docs. But this is great news!!!!!
We'll take it Abby! She also added this picture of Iron Man.


February 9, 2015
We are eagerly awaiting the results today to determine if Alex's bone marrow has recovered any white blood cells.

February 3, 2015
Alexzanders bloodwork from yesterday showed that his white blood cell count is really really low still. Lower than last week. It keeps falling. His anc is only at 270. He won't be able to go to school until that rises to a level that his dad and I are comfortable with. For now, we are back in a bubble. While his anc is low, he has no immune system. I will continue his schooling from home. We don't know how long this will last. He cannot take any of his chemotherapy until his ANC raises to 500. He has been off chemo for a week and a half now, and every day that passes without it is scary to me. I do y want the leukemia cells to have an opportunity to start behaving badly again.
We should be hearing from the oncology team today with a plan for when we will be testing his blood again. Pray.
November 12, 2014
Hi!!! Update! Alex seems to be doing great!! No relapse so far, and the blood letting we have been doing every month has decreased his iron in his liver!!! Yay!!! Still going to kindergarten when he feels up to it, and per his conferences last night, he is a bit ahead and one of the brightest in the class!!! Yay!!!!

October 6, 2014

So, after Alex being out of school for a awhile with this virus, I took him in for a half day today and upon drop off at the classroom door, his entire class started screaming "ALEX!! ALEX!!!" ~~ they were all SOOO happy to see him. Brought this mom to tears . Tomorrow he has a doctor appointment so he will have another half day. Hopefully after that it will be all over and full time student!!!

October 1, 2014
Alex has a peekaboo of pneumonia. Probably from the enterovirus. His doc gave a script for some good antibiotics. They want him out for the rest of the week and possibly Monday. He has a follow up on Tuesday. We are headed to Milwaukee hospital tomorrow to check liver functions and see the dentist. Then back on the 23rd for a spinal tap with intrathecal chemo, phlebotomy, intravenous chemo, and breathing treatment.

September 24, 2014
Back tomorrow! Alex got nose swabs (results pending), chest X-ray (not clear, but not pneumonia), labs (ANC high, which shoes he is fighting something), bilirubin was the highest we have seen in over a year, but all indirect, so ok-ish..., temp was at 100.6 when we left the hospital. We got to keep Alex's port accessed tonight so he doesn't have to be poked again tomorrow. Hopefully we will have some preliminary results back of his swabs tomorrow.



June 20, 2014
Alex's first week of summer school has gone
fantastic!!! He loves it so much! Everyday when
I pick him up, he says "It was the BEST day
ever Mommy!!!"

I'm so proud and happy that we have gotten
this far in his treatment. Come on, hurry up
April 2016!!! I can't wait for the end of treatment
and allowing our family to breathe a HUGE sigh of relief!!!!

Love you so much bubba!!!!

June 16th, 2014
First day of summer school today for Alex! He is starting a kindergarten bridging program to make the transition into full time school this fall a little easier. We are so proud that he has come this far and is well enough to participate. We just have to be on the lookout for other kiddos that may be sick and keep up with the hand washing. Easy does it!!!

May 28th, 2014
Alex is doing good ergo to therapy once a week in MKE now for his walking and alignment. We have been waiting on the insurance company for months about new braces for his legs soooo discouraging. He needs them, bad. He is causing more damage to his body not having them. He is in pain everyday in his legs, ankles and back because of it. I still give him oral chemo on a day basis. Once a week he also gets 7 chemo pills. Ten days a month he gets steroids also. Once a month we go back to MKE for his port access and get intravenous chemo. That's the stuff that is too strong to get orally. Once a month we also go in to get blood taken out if his body. About 150ccs. His iron is super high because of all the transfusions he had earlier in treatment. By doing this, it forces his body to create new blood and use the excess iron already in his body to make the new blood. Kind of sponging it up (iron). This is better than using meds to get rid of the iron which can cause organ damage. His bilirubin level is still consistently elevated. They attribute this to a condition called Gillberts syndrome. I'm not certain I buy into that diagnosis, but that is what the leading experts have determined, so, I subside. Every 90 days out visit to MKE is for a lumbar puncture (spinal tap) with chemo being directly inserted into his spinal and brain fluid. Remember, this membrane that surrounds the spine and brain is impenetrable by means of oral or intravenous medications so it had to be treated separately to kill leukemia cells. If he relapses, this is most likely where it will happen. He is still sitting on the same mortality statistics as he was at diagnosis. They say that even though we have made it this long, it means nothing until April of 2016. That is when we can consider him in official remission. They know from history, if we stop treatment before then, he will relapse. Leukemia cells are undetectable at 1billion cells and under. But we know they are there. That's why we treat for so long. To get rid of the ones we can't see, but know are there. After April of 2016, we can breathe a sigh of relief. He will still get treatment after that, but not as much. So, yes... He still has leukemia cells in his body. We are just trying to kick butt everyday at keeping them at bay. His current treatment doesn't take his immune system down as much as before, but it's still lower than normal. He is registered for kindergarten in the fall . We just have to be careful around other sick kids. He won't be able to keep up in gym class either. We don't feel that the radiation treatments to his brain stunted growth or mind. Very real possibilities. So that's good. I'm still not working as I feel keeping him away from other kiddos for as long as possible is beneficial. No need to throw him in a pool of germs and bacteria prematurely. The real danger is relapse, and being around kids who, for example, haven't been immunized. These kids will carry viruses that mine can't fight because if his immune system. They will be sick with the virus because they haven't had exposure (with vaccine) either. These situations are potentially fatal. Alex cannot be immunized either until after 2016. His system is too weak to fight the small amount of virus given for that. Good news, he is on track. No cavities and no vision damage. I am a tooth brushing machine. we do lessons everyday at home with math, reading, science, etcetera. He is very smart and loves to learn. His penmanship is still shaky. Expected, with the loss of use if hands and legs earlier in treatment, but we are working on it.



DECEMBER 2013 UPDATE:

Well, It’s been almost a year already since Alexzander was diagnosed. I greatly thank those of you who have been with us throughout this journey. Friends and family... without you, I don't know how I would have handled this. Alex has been through so much. To date, he has had well over 200 doses of chemo, over 80 doses of steroids, 20 spinal taps, over 60 times getting needles poked into his body, back, arm, and chest. He has been hospitalized for over a week six times and over a month twice. He lost his hair twice and ability to walk and hold a crayon for several months. He has traveled the journey to the MACC center in Milwaukee over 70 times totaling over 8,400 miles on the road for over 140 hours. He has had one ambulance ride. He has been in isolation six times. He had 8 days of cranial radiation which he had to be put under each time with his head bolted to a table. --- As this horrific experience fades in the minds of many as it becomes "old news", I want to remind everyone that it is still very real for us. He will continue to have treatments daily until 2016, but even then this is not over. Alexzander has an unusual mixture of conditions. He has ALL T-cell and also has MLL chromosomal rearrangement. The two conditions rarely come together. MLL is seen 99.9999999% of the time with B-cell, not T-cell. The doctors have not increased his mortality expectation or his relapse expectation. My little man is still in as much danger now as he was the day he was diagnosed as far as the docs are concerned, at least until 2016. They say that the first few years are the most important. If we can get through that, then we can hope for, and expect a brighter future. --- Although all of this is very hard for us, I do have to say that I feel VERY lucky that Alexzander is where he is. We have made friends with people from MACC who have not been so lucky. We said good-bye to a 13 year old with AML. A 3 year old with ALL. Saw a little baby with AML have to get a bone marrow transplant due to treatment not working and being utterly devastated by infection after infection and fever after fever, in isolation from her own sister. Our treatment is working so far. I feel very lucky that we are on this side of the statistic. -- We have been financially ruined. Fact. I thank those of you who have donated and continue to donate. That’s my gas money. That’s my lifeline. Without you, I would be lost.  I thank those friends of mine who let me show up at their houses unannounced, and allowed me to just sit... and cry. And didn't ask questions, didn't try to say that everything was going to be okay, because we didn't know that. Just allowed me to release in a safe place, and simply handed me a tissue. I love you. I'm sorry to those of you who have had babies and big life events that I have missed. --- We have led a sheltered life the last year outside of the MACC. Just recently we have began to venture about. Alexzander is going to daycare a few hours a week for social skills. He is excited to start kindergarten next fall. --- So, to end my rambling... Thank you to those who have been there in person, spirit, and by donation. Without ALL of you... we would be lost. I love and thank all of you. Hug and kiss your kids a little tighter tonight... and if it’s not too much trouble... throw a prayer in there every now and then for mine. Abby