“Why” doesn’t come close

I haven’t posted for a while. As I try to wrap my head around life and the way it happens, I find more questions than answers sometimes.
Losing my son has been a time that I have a hard time describing. It doesnt just hurt or make me sad. It is so much deeper than that. You know when your at a concert and you can feel the bass through your chest, well it is sort of like that only with sadness. Like every cell misses him. Which I believe that is true. So many things we learn in this unintended classroom of life. 

The New Year

It’s nearly 3 months since my son passed away. My heart still has a huge void. I have thought of posting many times, but just have not been able to bring myself to do it until now. Today is actually 1 year since his first MRI found his brain tumors.

I have been on such a roller coaster of emotions for a full year. So if I go too fast message me and I can fill in the blanks.

I miss my son. I miss hearing his contagious laugh, giving him kisses and feeling his kisses, hugging him and feeling his hugs. These are just a few of the things that I feel on any given day. I think I was lucky to be able to spend each day, 24hrs a day with him. I also have realized my friends old and new are really there to support me through all of this although they really don’t know what I’m going through.

Learning to live without my son is difficult.

Friday comes

Friday September 14, 2012
Today when i asked my Buddy what he needed he answered he wanted breakfast! The antibiotics must be doing their job. I get him whatever he wants. He eats only a few bites and that’s ok because it’s more than he has had in the last several days.

This continues through the weekend.

On Monday when when the Drs talk to us it is the same, however with the thought that now the hole may have sealed itself off and temporarily be closed. They suggest we try oral meds again as we had to switch over to all IV on Wednesday. We try and it seems as though even the basic meds give my Buddies belly an irritation that he doesn’t like. We also discussed options outside the hospital. Home would be first choice, but would want 24/7nursing because it is time to just be Dad and Mom. One option is an inpatient Hospice facility near home and the third is stay in the hospital where we are. The answer on 24/7 nursing is found fast – not available. Sort of strange, but would have thought it was available. We have to set up an appointment to check out the Hospice House and essentially compare it to the hospital. On Wednesday my wife goes to check it out, she leaves at 10am, my Mom meets her there and apparently her sister too. They call raving with compliments about this facility. I am still unsure as my visit is tomorrow. My wife gets back to the hospital at almost 7pm.

On Thursday my Mom offered to meet me at the Hospice House and we would ride back to the city together. I declined her offer knowing she would get here sooner and get to spend more quality time with my Buddy that way. So off I go alone, again.
I go to check out the facility and think, as I am asking to talk to the Dr who will be I control of my sons care, it’s another place to get used to, what will it be like for my Buddy, what is the right thing to do? I go back and discuss my findings and concerns. We agree to try it out as it is much closer to home and will allow more visitors and he loves his visitors.

Friday September 21, 2012
We ride in the ambulance to the Hospice House.

Wednesday’s decision

I feel like this is a lose lose situation. The decision was no surgery… I spent the night lying next to my son in his hospital bed as I cried and told him how much I loved him. What a terrible feeling, to feel so helpless against this cancer and the medicine that was helping is likely the cause of this intestinal hole.

Thursday September 13, 2012
Things are quiet. Nobody got much sleep. We began antibiotics last night and some suction. This is something parents should never have to go through.
My son, my little buddy is a tough little guy. He shows me, he shows everyone what living is about. He is still in pain although he is now on a continuous pump of pain medicine, so we give him additional doses when needed. He still smiles and tells me I’m “the best father in the world”, which always brings tears to my eyes. This crying stuff is not something I’m used to, I had not cried for years. It’s the point that this is my little boy, who is always such an inspiration, such a magnetic personality and always by my side holding my hand wherever we went. It is heartbreaking…

Wednesday September 12, 2012

Wednesday September 12, 2012

Today we start out the day talking to the Dr and he says we are at a point he thinks going home is ok, except for the belly pain that is persisting and wants to get an X-ray. He is thinking it won’t show much and tells us if that is the case we will be getting a CT scan to ensure we know what is going on before we leave. I think, going home is a pleasant thought. There are many things I want to do before this cancer grows more.

About 5pm our nurse comes in, she has been great, and takes my Buddy off a feeding machine that they wanted to try for nutrition as he is hardly eating or drinking. She says he just got posted as NPO ( can’t eat/drink anything and usually means a test of some sort) and the Dr was right outside to talk about it. The Dr comes in a few minutes later and tells us as he had expected to find nothing they found something in the X-ray. They found air in the abdomen and that is not supposed to be there and it is a bad thing. He says he is concerned and has called the surgical team. He continues to tell me why it is bad, it means there is air/gas escaping from either the stomach, intestines or bowel and usually if there is air escaping there is bacteria as well.

That is a problem.

He continues to say we have a CT scan and wanted an empty belly I case we need to go to surgery ASAP. The surgeons come in and talk to us as we are preparing to go to CT scan, put in another IV line, change his NG tube to a suction tube and talk to us. The head surgeon comes in and reviews the case telling us that he feels the CT scan would be of no use and we will need exploratory surgery to find the leak. It will begin as arthroscopic surgery, but will probably end up opening him up. I ask what about the healing from that as his last surgery on his shunt took over a month to heal. He said it will be that then some as the chance of infection is even more present in the intestines. The surgeons continue to explain they will give him fluid and if the hole is not repairable due to the fluid they will have to close up the incision with a mesh and go back in another time to make the repair. I again ask if the chemo is going to have an effect on his healing (an answer I know) he said they have pumps and devices that would assist if it was not healing properly.

Our oncologists met with us and helped us understand what to expect of surgery. It would be a lot on his already compromised body.

What kind of decisions are these for me to make? It hurts to think about it let alone make this painful decision. I can’t help the tears as they fill my eyes and roll down my checks.

Tuesdays meeting

Tuesday September 11, 2012

Today we have 2 meetings planned. The first is With the Dr’s and the second is with a team to help transition home.
The first meeting comes up and we sit in this meeting planning on eating lunch and talking. The discussion began as he pulled up images of my sons MRI and began telling us the spinal fluid they drew had live cancer cells in it and they are unsure of what they are so they are consulting more doctors to evaluate what they are looking at as well as comparing it to his previous biopsy results. Once he got the images he wanted to view up he began telling us there is a shadow in his spinal column along with what looks like the spinal column is enlarged. WTF, is my reaction… He continues to say that knowing this it is a good idea to hold off on his next round of chemo (he is due for Bevacizumab today and his Temozolomide in 2 weeks) as they are not holding off the cancer as well as they once were. It has found a way around the treatments. Needless to say this is not what I expected to be hearing. And the words that come next were important, it is rare for a child his age to have this type of cancer (we already knew this), to see it spread into the spine is rare as he continued to tell us again that they don’t have enough research and medicine to battle this type of cancer as they told us back in March. The Dr said he wanted to see what the final results were from the lab as they are still looking at them.

This news, as it was expected someday I would hear these words, I didn’t expect to hear them today. Tears flow down my checks as I think of my little Buddy and all the great times we have had and the fight he has put up without EVER complaining, not one day, not about one procedure or surgery. What a tough little warrior my boy is, what a terrible thing to happen to a boy who has a heart of gold and would rather take the blame for his friends than rat them out. He is an amazing little guy. My Buddy, my son… I love you so much…

Today is like being told his diagnosis all over again.

I extend thoughts and prayers to all who lost their lives or assisted with the 9/11 tragedy as we will never forget.

Monday…

Monday September 10, 2012
We have a spinal MRI today, yep the same one I asked our other hospital to do last month. It took a day to order it and get it done here. They continue to bring in more teams to figure out the increased skin sensitivity, nonexistent appetite, not drinking much, belly pain and distended. We must have talked to 40 different doctors. The neuro team is working on changing meds. That was what I thought would be useful as well as getting imaging of his spine. This far all of his head MRIs have been looking unchanged and it is as if you could lay one on top of the other and see no changes – that’s good so why the obvious changes in his outward activity level, eating, etc…. I keep praying…

Another trip to the hospital

Tuesday September 4, 2012, we began another part of this journey. My son woke up with a bad headache. We gave him the headache medicines, but it did not take away the headache. We went to our scheduled clinic appt early. That was the fastest clinic appointment we had since this roller coaster ride began. They gave him 3 doses of a stronger medicine and sent us home. the headache persisted along with a lowercase fever, weaning appetite of a boy who eats very well, not drinking hardly anything and not urinating much. I am concerned.

Wednesday September 5, 2012 my Buddy has a fever of 100 degrees and has to go back into clinic to get antibiotics. They send us home and on the ride the bumps in the road hurt his head. 😦

Thursday September 6, 2012 still not feeling good we power through and go to Physical Therapy. She finds changes as we had and wanted to let his Doctors know what changes she noticed, we agreed.

Friday September 7, 2012 my son still has headaches. His appetite is minimal, a bite here or a sip there. No full drinks, no full meals, not asking for snacks. My concern grows.

Saturday September 8, 2012 we have a plan to go have some fun. To begin we are going to McDonalds for lunch. He requested getting a rain check on the fun part and wanted To go back home because the ride was hurting his head. 😦 We went home. We went for a walk, saw a neighbor chatted and went home. It was then we noticed that a screw holding the clips in his skull was exposed. I text a picture to our doctor, we went to the bathroom and turned around and got back in the van and went to the ER. Not much results at our ER so we transferred to our second opinion hospital Sunday morning.

It’s just crazy…

Sunday September 9, 2012 we check into the hospital after being transferred by ambulance. I talk to the doctors and they begin doing assessments and tests. We had his shunt tapped, a spinal MRI and the usual blood and urine tests. We rest and wonder what tomorrow will bring. Rest…. A great idea, but not really happening….

As the title says..

I am a Dad to a great son who was diagnosised with brain cancer in Jan of 2012. I have to say it is by far the hardest news to hear as a parent. If you Google grade 4 glioblastoma you will know the heartache I feel every minute of each glorious day I get to spend with my Buddy, as I have called my son since birth. See he has always been my buddy, I sit on the couch – he jumps in the seat next to me, we go anywhere and he is by my side and he wants to hold my hand, I get home from work he has always been there with a smile and joking with me. It’s how we are with each other. It is the easiest and purest love, unquestioned.

Stunned I talk to the doctors, pediatric oncologists, pediatric neurosurgeons, have MRI’s CT scans, X-rays, and get to know these familiar faces through our 2 month stay in the hospitals. We are told by the radiologist “You will have to make hard decisions, decisions for your son that you would rather be making for yourself”. He was right. I have learned many things this year. Some being medical know how I never thought I would need to know, how helpful steroids are in medicine and that every it seems every medicine has a good side and an effect, it seems you need a pill to counter the one you just took!

I have been to every appointment, PT visit, OT visit, X-ray, CT scan, MRI and almost every time I am in the test with him. Encouraging him, letting him know I am by his side. Always, by his side.

I try to make everyday a good day. Trying to make “lemonade” out of lemons. As my son went through the “standard” plan of chemo coupled with radiation he did it like a trooper. Never complained about any of it! We now continue on chemo and he still doesn’t complain, what a strong little guy. I love him and just want to help him any way, every way I can.