Big A's Travels

No words

2016-06-07T02:04:00.001-05:00

Saying good night and good morning to an urn and a picture are so very painful every day. I miss my son so much it hurts. It really truly hurts.

I miss you bear, every minute of every day.

Reflections

2015-08-09T03:02:00.001-05:00

My son has cancer...again. Those are extremely hards words to say, let alone comprehend. I'm still trying to cope and deal and understand what all this is. For some people they turn to a god for answers. For others, they deny it and try to stuff it away. For me, I try to face it. Face it head on, for myself and for my family, but especially for my son. I've been saying it alot lately as I talk to people, friends and family. This was certainly not the life I chose, but it is the life I have been given. Therefore, I must learn to adapt to it and cope with it for Lucas. If for no other reason than because this is his life. He is the one getting the chemo. He is the one feeling like crap. He is the one that wants to be alone rather than surrounded by people. Maybe because he can deal with it better than I ever will. Because this is the only life he knows. This is his "normal".

I talk to him daily about how he feels. Physically, mentally and psychologically. I try to decipher his 5 year old responses and turn them into adult logic, but sometimes it doesn't make sense. For instance, he has been stuck on accessing his port and receiving propaphol (sp?). He tells us multiple times a day how it feels and what he sees and hears, and how the nurses have to squeeze his access site. He tells us how the erwinia shots really hurt and how long the needles are. Yet there is an absence of how the poison we call chemo, feels as it is pulsing through his little body. We know his stomach hurts from the oral meds he has to take multiple times a day. However, he seems to simply be dealing with his life as best he can.

Because this is his life. He asks me everyday "when do we have to go back to the hospital" and I tell him when the next appointment is. He says "Ok, I'm just checking." He has been asking us lately how we are doing. YES, he is just as concerned about us as we are him. Not that I'm surprised, but I admit I can become speechless by it.

Tonight we had a few friends over. We grilled and we had a few drinks. We talked and laughed about life. We tip toed around the "C" word. It is difficult for friends and family to find the "right" words. Here's what I want you to know. There are no right or wrong words to say to us. Your words will be the right words. Ask us how we are doing, it's ok. Or don't. That's ok too. We understand that life goes on. It may not seem like it, but we know it does. We still want to know the good and bad of your lives as well. You are family. You are our friends. We still care. Maybe we can't react as fast or at all, depending on our current situation, but remember that you care about us and we definitely care about you.

It is 3am in Chicago and my mind is still going 1,000 miles an hour and in every direction possible and I have so much more to say, but I think I need to try and get some sleep. So in closing, thank you for being you and thank you for listening. Thank you for not forgetting and thank you for loving Lucas.

Good night World.

The cancer is back

2015-07-25T01:48:00.001-05:00

I realize that a few readers aren't on Facebook. I apologize for not updating my blog more often but we've been preoccupied. Below is a recent post from Lucas Bear Heroes Facebook page.

We are back in the Hem/Onc unit at Lurie's. It has been determined that Lucas now has T- cell A.L.L. Other blood work results are still pending to further identify additional markers. We will begin initial treatment immediately to see if we can get it into remission. This process is supposed to take about 4 weeks. At that time Mama and Papa bear, along with the cancer team, will assess Lucas' progress. There is no future forecast at this time. We must take this exactly one day at a time. We will also be meeting with the palliative care team as well. I'm sorry that I'm being so matter of fact about this, but as a family we are overwhelmed and defeated.

Priority is to continue to reduce the size of the mass (not tumor) in his chest. X-ray showed reduction this morning. We will repeat tomorrow. Chemo has begun. We will not be able to come home until that stabilizes as well as his blood counts.

We will do our best to keep you all updated as often as we can. We know you love our bear, but his well being comes first.

Almost there

2015-05-11T21:42:00.001-05:00

So I realize I haven't given an update on Lucas in a very long time and I'm sorry for that. We have had a lot going on life. Living it, learning it, getting by.
We've changed homes. Moving from our beautiful single family home to a small 2 bedroom near by. I'm not trying to complain but it is taking some getting used to. I've also started a new job as most of you know.

Lucas is progressing well. He's nearing the end of treatment! ! We have almost a month to go before he no longer has to take chemo, no longer has to get a poke in his booboo (as he calls it). No more monthly visits to the clinic (just a few here and there for the next 5 years) to do blood work.

This is an exciting yet terrifying time of our lives. We have adapted to the cancer way of life. The visits, the uncertainty, the unknowns. We will soon be able to see an non sedated, non medicated child for what will really be the first time. I still remember the day Lucas and I walked home from day care and he pointed to his little heart and I had no idea that in less than a week his tiny life and ours would be changed forever. I can't think about it without crying. To this day, I still think to myself that I should have known.

In mid June we will be going to Legoland Resort in San Diego, CA all thanks to Make A Wish. This trip has been in the works for awhile and we are all very excited to go. By that time Lucas should be completely off chemo but still on Bactrim. Many pictures to come.

Thank you those few people that still check my blog. I'm try to better and update more often

Cancer. ... Life. ....

2014-11-12T23:34:00.001-06:00

My son has a full head of hair. He smiles. He doesn't "look" sick. He can walk, run, jump and play like a "normal" kid. He goes to school and reads, learns and studies.
Tonight my son fought with his mother and me for over a half hour. Cried inconsolably for another half hour. Spit his medicine all over himself. Why? Because he has cancer. Because he is still in active treatment. He still receives chemo daily. Steroids monthly and suffers hourly. He fought with us because the steroids affect his tiny little emotions. He doesn't know what to do or how to say what he is feeling. He is frustrated. More than us. He tells me every night and asks why he has to take all this medicine, all the time.

He doesn't "look" sick, though. So please keep that in mind when we have off days. When we don't have answers. When we cry. Remember, cancer still controls our life. We pretend it doesn't, but it tells us where, when, why and how. It controls a 4 year old that just wants to be "normal". To not have his booboo and go to the hospital. To not take medicine and see his parents cry without explanation.

Remember, cancer isn't gone even when it's gone.

Lucas One Year movie

2013-09-02T22:29:00.001-05:00

Light the Night Walk October 19, 2013

2013-08-19T18:36:00.000-05:00

Lucas Chronicles:Heavy heart

2013-07-30T00:12:00.001-05:00

I am writing a much overdue update tonight but with an extremely heavy heart. I don't want to share details yet, but we received some very concerning information regarding Lucas' blood work from today.

Simply put we need everyone's prayers right now. I can't sleep and not sure if I will tonight, but I will hug the bear tighter and kiss him longer tonight.

Please keep us in your thoughts.

Patrick's Pals: A Cut Above: President and Mrs. George H.W. Bush J...

2013-07-24T22:46:00.001-05:00

Patrick's Pals: A Cut Above: President and Mrs. George H.W. Bush J...: President George H.W. Bush and Patrick Our little guy received some high-powered support this week when President George Bush 4...

Lucas Chronicles: HD Methotrexate

2013-05-10T10:27:00.001-05:00

Lucas has been cleared for another round of HD methotrexate. He will be in the hospital at least until Monday. Nervous, scared and worried don't begin to explain the feelings we have today. This medicine is nasty, simply nasty.

Lucas Chronicles: A month gone by

2013-05-06T01:49:00.001-05:00

Almost a month has gone by since my last post. Where did the time go? Let's see: Lucas is back in the hospital tonight for blood in his poop. We are waiting for results right now.

My grandmother passed away on April 16th. She was 91 years old and had begun to fade away quickly after my dad died. However, she fought until the end. I was able to go back to Ohio for the funeral but had to leave the family in Chicago because Lucas was in the hospital for chemo.

Some great people were able to donate coffee makers and a tricycle to the 17th floor on our behalf. It was awesome to be there when everything was delivered.

Franco got a sibling kit from Beads of Courage and he was super excited to read about each of HIS beads and what they stand for. He sees Lucas get all of these beads every month and the story they tell. Now he can tell his own story as well.

I'm worried about my job. The time I have taken for Lucas over the last 8 months has taken its toll on my career. We've also had some territory changes for our client and it doesn't constitute two people doing my job. In order to keep a paycheck and diversify my skills, I applied for a position within the company. I had an interview last week and hope to hear something this week one way or another.

Spent the weekend getting our yard ready for the summer. Here's to another summer. Cleaned the garage and got the herb garden going. Now here Lucas and I sit in the ER, waiting for answers.

Lucas Chronicles: Yet again...

2013-04-10T21:36:00.000-05:00

Having almost a month off of constant and intense chemo really sucked. It gave us a taste of normalcy and freedom. A glimpse of what "normal" and "regular" are. The ability to travel and visit with friends and family. Now this week we started up chemo again. Lumbar puncture Tuesday along with a triple cocktail injection. Also Daunorubicin and Vincristine. Today, Dauno at home, but still able to make it to day care and be with his friends and his wonderful teachers. Tomorrow we are inpatient for 3 days or so for cytoxin along with neulasta. Next week begins the tortuous regiment of Erwinia for 6 doses. Bruised legs and painful injections. Long days and nights. Perhaps fevers and ER visits.

I watch our little bear smile even through the pain because this is his life. His pain, his struggle. As his father, I struggle to watch him go through this every day. I try not to complain about my aches and pains or my "little" problems. I also struggle to cope with the fact that all I can do is assist the Dr's and Nurses with his treatment plan.

Here's to another week of Cancer. Another week of volunteer visits to see if you need anything. Crappy coffee delivered by Brenda (the nicest, happiest person I've met in a long time). Rescheduling a wedding anniversary and birthday for my wife and I. This is life, this is cancer. This is just another reason for more research and awareness. Not my pain or complaints but for the pain and suffering of our little ones.

My salute to The Bear and Pediatric Leukemia

Still my blog

2013-04-08T22:24:00.001-05:00

I have struggled with separating this blog and creating one specifically for Lucas, but I created my blog so many years back in order to tell the story of my life. Good or bad. Might make it easier for me to write my book before I die!! For now I will keep them together as he is the biggest part of my life and his story WILL be told.

Tonight is a little bit about me and little bit about us. First us:

Had a wonderful week in Ohio with my family and our friends. It was the first time we have been back since Lucas was diagnosed. Many people haven't seen us since last July. It was nice to celebrate my birthday with everyone at one time. Sometimes it is hard to see everyone individually when we are in for a short time so it was great to get together. HUGE thanks to my sister for sacrificing her house to hold the party. Thanks to everyone for the donations and birthday gifts. Always greatly appreciated.

Now onto me. Today I was summoned to our corporate office for a discussion. I won't get into the details as I know who my readers are but I have alot of decisions to make this week. I will say this much. Over the last year, I have been handed a ton of shit, yes shit. Everyday, I wake up and figure a way to dig myself and my family out of it. I don't always succeed, honestly, but I try. And I will keep trying. Today I was handed another road block and I will try to find a way to move it out of my way and turn it around positively for me. One way or another. To those that I can't see or speak to, Thank you for the education and support. To the NAY sayers, get out of my way. Watch and learn. I won't let cancer beat my son or family, I sure as hell won't let you.

Lucas Chronicles: last minute transfusion

2013-03-28T18:51:00.001-05:00

Back in the hospital for a last minute transfusion after getting blood work results from this morning. I'm so good at coming to the hospital, I had my bag packed, a baby sitter for Franco, and picked up Lucas from daycare in less them 20 minutes.

Still planning on going to Ohio tomorrow. Can't wait to see everyone.

Lucas Chronicles: Chemo is Back

2013-03-27T00:17:00.000-05:00

Lucas is back on chemo. He is taking a 5 day regiment of prednisolone. He is also taking 6MP. This is basically a routine that will take place when Lucas gets to the maintenance stage of his treatment. We have finally been able to plan a trip back to Ohio to visit family. We haven't been there for over 9 months. It will be nice to see everyone again.

Tonight Rina came home with a donation box from a gentleman that is in her Zumba class. He took one of our pictures from our Facebook page and took the box to work to ask for donations. He doesn't know us, not a friend, not even an acquaintance. He just heard our story and chose to help. An amazing thing for us. Rina has also had HUGE success with people buying our bracelets at her class. Again, these people don't know us personally. They just show us that good humans still exist. These donations couldn't come at a better time for us. Thanks for everything you all have done for us.

Lucas Chronicles: Fantastic news

2013-03-15T22:39:00.001-05:00

Although yesterday was a horrible day for Lucas, today made up for it. We finally received word from the hospital this afternoon. The nodule on Lucas' lung is getting smaller. So much so, they almost can't see it!!!! Words alone can't explain how relieved we are. Thank you to everyone for the prayers and continued support.

Lucas Chronicles: CT Scan

2013-03-13T23:28:00.001-05:00

Tonight I am restless. Tomorrow we have Lucas' CT Scan to see if the medicine has done anything to the nodule in his lung. I am working with fear and worry about the results. Please pray we get good results.

Lucas Chronicles: Feeling better

2013-03-12T14:35:00.001-05:00

Lucas is definitely feeling better today. He had an impressive BM and you could see the relief in his face afterwards!! He took a little nap and is eating spaghetti & meatballs. If he can keep it down then we should be able to go home today.

Lucas Chronicles: distended bowel

2013-03-12T07:55:00.001-05:00

I haven't updated lately and wanted to give you some news. Lucas developed Cdif this weekend and yesterday we brought him in for vomiting & stomach pain. X rays show that he had a distended bowel. They are monitoring him right now and we hope to have an update later today. I wish my little bear could just catch a break. We are working on some things to get some good bacteria into his body to help him digest food much better.

Lucas Chronicles: Text to Donate Day March 16, 2013

2013-03-05T11:54:00.000-06:00

As you can see we are having another fundraiser. It is the simplest fundraiser we have. All you have to do is text WISH to 80077 on MARCH 16 and you will donate $5 to Lucas Bear Heroes. You can do it once or as many as times as you would like, but it can only be MARCH 16. If you do it before or after that day, then that money goes to someone else. Please share this with your friends and family.

Lucas Chronicles: Freedom& isolation

2013-03-02T12:59:00.001-06:00

So we have been sequestered for the weekend because our home health company doesn't have any IV pumps too send us home with. On the bright side, Lucas is out of isolation. A very rare occurrence when we are in the hospital.
Regarding the new anti fungal Lucas is on. His potassium levels dropped over night so they gave him supplements this morning. We had to fight to keep him on fluids in order to make sure his kidneys are getting flushed out regularly. As I have said before the biggest concern is kidney damage with this medicine. He seems to be tolerating it so far, but we are watching him closely.

Lucas Chronicles: Another Set back

2013-02-27T21:48:00.000-06:00

Another set back in Lucas' treatment has come. We have told you about the nodule that was found 2 weeks ago on a CT Scan and the lengthy discussion that was had not to treat it or biopsy until his counts were better. His ANC was 700 this morning so it was decided to do another CT Scan to check the progress of the nodule today.

The discovery: The nodule has gotten larger in 2 weeks. It appears to be about twice the size it was 2 weeks ago. The Doctors are trying to assure us that it is not a tumor and they believe it to be an infection. The bear will have a biopsy tomorrow morning sometime to hopefully identify what we are dealing with so we can come up with a plan on how to take care of it.

I do not regret not treating it 2 weeks ago because Lucas is in great spirits and feeling better. The only problem is these damn fevers keep popping up. Bear has been officially been fever free for 23 hours!!!! The nurse just left and drew some blood for a PTPTT (coagulation test). If his numbers are off then he will get Vitamin K and FFP to correct them and make sure he clots properly for the procedure.

Tonight I ask for you prayers for our bear. This is worse than the day he was diagnosed because there was an answer that day. Tomorrow there may not be an answer and we begin to treat this blindly with the faith and knowledge of the doctors. I also ask that you pray for my wife and I as we need it too. This gets harder and harder every day.

Lucas Chronicles: Another Fever visit

2013-02-23T15:03:00.002-06:00

I simply copied and pasted my Facebook post today. Not enough energy to write more. We were admitted again Thursday afternoon for a fever. Lucas' spirits have remained high the entire time despite the fact that his ANC is 6, hemoglobin 8.6. He keeps eating and drinking like a champ.

After fighting with the Dr. for a day to get a blood transfusion because hemoglobin was 9 yesterday morning (8.6 this morning) and we knew it was going to drop and our primary agreed too, Lucas is finally getting his blood. However, the doctors had to do it on their own accord. They did rounds this morning and said "he doesn't look like he needs blood", "he's so active", "we don't want to expose him to infection" blah, blah, blah. They said to wait until blood draw on Monday and then we go from there. They walked out of the room. I sent an update to Rina and then our nurse, Libby (sorry to Libby for snapping. I didn't mean to take my frustrations out on you. I did apologize to her in person) she peaks in and says they (the Dr.) decided to give him blood today. She said the charge nurse told them we have been talking about it for a whole day now.

TIME TO VENT: Just because you went to medical school doesn't make you smarter than me when it comes to knowing Lucas and his body. Please check your ego and arrogance at the door as you ask me to be understanding, I simply ask the same thing. The facility boasts FAMILY BASED care, but sometimes I still feel like it is their way or no way. My biggest frustration is that these specific doctors don't actually know Lucas. They know what is on the piece of paper and they require 3 to do rounds and make a show of power. I don't need it. I want less time bickering about the small stuff and more time spent FINDING A DAMN CURE. Not just for Lucas but for every child on this floor. I could go on, but I'm done. Simply done today.

Lucas Chronicles: Sleepless in Chicago

2013-02-21T23:57:00.000-06:00

Can't sleep when mommy and the bear are at the hospital. Lucas is back in for a fever and he is neutropenic. ANC is 100 and platelets are 6. I am home tonight with Franco because I have to work at a job site in the morning and Rina has the day off. The snow began to fall exactly when Tom Skilling said it would, 10pm. He's the best damn weather man in the world.

I need to try and get some sleep. I have to get up early and shovel snow and get Franco off to sitters before I fight traffic. Good night readers. Please keep praying for Lucas Bear.

Lucas Chronicles: Weekend Update

2013-02-16T15:11:00.000-06:00

Sitting in the hospital right now waiting for Erwinia shot to be done. 10 second shot requires a 2 hour wait time for a reaction. We got here at 930 this morning and didn't get the shot until 1230 and now we wait. My mom said it best, when your kids gets cancer, your (social) life is over. It's true, we can't plan for anything. WE have been invited to, wanted and yearned to go to this event or that. Unfortunately, it just doesn't work out. I'm not complaining because my family is my life, but being with friends and family is good for the soul.

Rina and I are going to dinner tonight for the first time in.......I can't even remember. It will be nice reprieve from our current situation. I have come to the realization that I don't respond to texts or emails or facebook as much as I used to. I feel bad about not getting back to YOU. Who ever you are specifically this month. Many people send messages and I just don't get to them, for that I am sorry.

Last week was a bad week for me. I am finding that my personal limits are getting shorter and shorter. My tolerances with cancer are getting less and less. My knowledge about it and so many other topics is growing but I feel I need to know more. To know as much as the doctors and nurses. Not to be better than them, but to completely educate myself in this disease that controls my lil' bear. I ask hundreds of questions and sometimes I fear that the stumbling from the medical staff is lack of knowledge. I want to know, I need to know and I will find out if you can't answer my questions.

I still cry every day. Sometimes by myself for no apparent reason. Sometimes because I have looked at old pictures of Lucas b.c. (before cancer). That gets me every time. Not because Lucas isn't truly a fighter or not happy but because his happiness has struggle surrounding it every day. He is "normal", "good", "healthy" about one week a month on average. It hurts my soul to see him suffer. If I couldn't write, I know for sure I would have been dead 2 months ago of a massive heart attack. Knowing that, I have really tried to make a conscious effort to eat better. I'm not exercising yet, but one step at a time. I am actually proud of myself that I will make a healthier choice for a meal even when that BAD choice is screaming my name.

As I proofread my post, it is clear my mind is in shambles. I can't focus on a single topic for more than a few minutes. I need to call my naturalist Cindy and get back on a routine. Clear the mind, body and soul of bad and focus on good.

I leave you today with a recent picture of Lucas and his Beads of Courage.