The Journey Continues....

Once again, it's been a while since I've posted.

We went up to the University of Michigan earlier in March.  Basically, the doctor at U of M stated the tumor at this point in the hip, would be inoperable since it would involve a major reconstructive surgery.  The goal would be to kill the tumor or shrink it.

Karmanos has been wonderful to my son.  They have truly helped him to explore other options.  Unfortunately, the "GEM" chemo did not work, so they worked to get him back up to U of M for a clinical trial .  He started the drug yesterday, which is a pill form.  He is in a significant amount of pain with his hip; unusual for him because  he has actually been complaining of pain, which he never complains.  To me that tells me the tumor is getting bigger.  He is taking two different types of morphine; a slower acting one 100 ml. and a quick release one which is 30 ml.  His pain is increasing....

There have been some bumps along the road since I last posted.  He ran a fever one night of close to 103....I took him into emergency, found out his red blood count had dropped to under 8, so he was given 3 units of blood.  Thank God, there was no sepsis.  They never really found out what spiked the fever.  

Then during some scans, they found out he had a pleural effusion outside of both lungs about a week after that episode.  So, he went in for thorocentisis on each lung on separate days.  His doctor did not find any cancer cells in the fluid, so it was probably due to all the chemo he's had.

I keep praying for a miracle from God, to please cure and heal my son of this horrible disease, or at least to ease his suffering.  My poor son; I love him so much, and I can only watch him how he suffers.  I tell him that I love him and how proud I am of him, but I've got to find some way to elevate his pain.  Dear God, please help my son.  He has been such a good boy and he deserves to live a healthy life.  

Please pray for my son...

University Of Michigan

Been a while since I've updated. Things have been ok, but somewhat stressful.

As we continue this journey with our son, we and our son both have gone through the whole gambit of emotions. There is a lot of anger, sadness, depression, frustration, desperation and fear.

Finally received clearance from the insurance company so he can have a consultation at the University of Michigan, an out of network provider. We practically had to pull teeth to do it, though as this is a State HMO and there are so many restrictions. I believe they do this on purpose feeling you'll throw your hands up and give up since there are so many other things you must deal with and you'll just go "the hell with it" and let the insurance companies have their own way. They have also been denying my son a lot of the medicines he takes for either nausea or appetite such as Marinol (which is a medicinal marajuana) stating it's "experimental" or "formulatory" whichever that means. The previous carrier that we had prior to this carrier always approved it.

He has so far received a round of chemo (part 1 done one Friday, then part 2 of the first round done the Friday after) and goes back this Friday for a check up then round 2 the following Friday. He's doing it outpatient, which he's happy about, but he's not as well hydrated with IV's and Zofran as he would be in the hospital as they run him on meds 24/7 for the time he's in there plus they give him a nausea patch to wear on his neck.

I notice the doubt in my son's eyes that he's going to make it. He's become brooding, angry, frustrated at the whole matter, which who can blame him, only being 23 years old. He should be in schoool, working, enjoying life with his buddies, etc. not constantly being sick and wondering what the future holds. My poor son...I love him so much. I never had any trouble with this kid; he was always bright and sunny and everyone loves him. I always had a deep sinking feeling in my soul that something was going to happen to him. Call it mother's intuition, not sure, but I was always afraid something would happen to him.

He doesn't talk to us much, he just sleeps a lot and when he feels good, he'll watch TV or play on the computer. My family has been very supportive, sending him money for expenses, baskets of goodies and a former teacher who retired and moved out of state has been knitting him hats in case he loses his hair again. His former co workers put together a Valentine's basket and brought it over last Saturday. He still does not want to see anyone or talk to anyone from his past. His friends are all extremely worried for him, but I can't force him to talk to them on the phone or meet up with them.

He hasn't had much of an appetite, but last night he made a tuna sandwich and made a total mess of the kitchen. My husband got somewhat upset, but it's just the frustration of it all.

Till next time.....

Updates

It's been a while since I've updated...

We went back to Matt's onocologist for an appointment, he is now basically telling us the standard chemo is not having the effect that they want, so they are now want him to go to the University of Michigan, a top notch cancer hospital to see if they can offer him more. We did see another doctor this past Monday @ the Karmanos Cancer Center who will bend over backwards to assist. The doctor there told us his scans should have been repeated after every couple of rounds of chemo which was not being done.

We took him last night for a CT scan of his lungs (what the Karmanos doctor ordered) and he will follow back up with us. In the meantime, I have made contact with the U of M and they already had part of his records since I had sent them there exploring clinical trials. It makes my husband and I somewhat angry that his own doctor did absolutely NOTHING to assist him with getting him into a clinical trial or trying to help us. I had faxed him all sorts of info and followed up with phone calls and never got a call back. That was HIS responsibility to do, according to Matt's orthopedic onocologist who did his surgery.

U of M will need the slides as well as the MRI scans which I gave to Karmanos. When I talk to the doctor, I will have him forward to the U of M, as those were mine to begin with and I was just giving them to Karmanos to review.

I have also contacted a Case Manager to put Matthew in Case Management at our insurance company. U of M does not accept my insurance, but if the doctor writes a letter (which unbelievably his onocologist will) stating he can do nothing more, than their is a very good chance they will let him go to U of M. The people at Karmanos have been wonderful and will also do what they can to help us get into U of M if we need to. I called his onocologist to have the letter sent and when his last office notes are dictated they will send out and call me back. That will be sent to the insurance person we are working with.

Issues:

I am tired, very tired and stressed out. I work full time as I have to carry the insurance for our family. The people at work have been extremely accomodating to me, which I truly appreciate. But I wish I had someone to help me with everything. My husband doesn't understand this and everything falls on me to handle.

I am angry when people make comments to me about how awful this is, the severity of Matt's disease and what am I going to do, etc. etc. Please just give me your support and pray for my son.

Why aren't the doctors doing more to help him?????

Everyone please pray for my son Matthew.....or give someone a hug, tell them you love them, and think of my son.

Clinical Trials

I'm checking into clinical trials for my son. I keep calling the onocologist's office and no one calls me back.

The most knowledgeable hospitals I have found are:

MD Anderson in Houston Texas
Barbara Ann Karmanos in Detroit Michigan
University of Michigan in Ann Arbor Michigan
Cleveland Clinic in Cleveland Ohio

St. Jude's is out because they only help kids up to age 18. Sloan Kettering didn't really seem to know what was going on, Karmanos doesn't have anything right now, but the people there are extremely helpful and are bending over backwards to help and assist.

From what I'm gathering, the first step is to assemble all his records to send to the places we'd like to be considered. Then there are a lot of insurance issues; most insurance companies think that clinical trials are "experimental" and they do not cover the cost. The most optimal way to go is if one can find a study that's funded by either the government or the drug companies that covers the cost of everything. He's still in the hospital, as his methodextrate levels are not low enough to let him out yet. We went up to see him last night (it took me almost 2 hours to get home last night due to the road conditions) and he was sleeping.

A doctor who works at the Cleveland Clinic called me to find out his history. I'm not sure if she was a research doctor or a practicing pediatrician. She had a hard time believing he'd have another tumor in the hip area, as osteosarcoma is rare there...also she said the high dose methodextrate should have been given with the cisplastin and doxorubin originally..which I had read before. My heart sank when I heard that, I had questioned as to why that wasn't being done before.

I'm beginning to feel very guilty that where he is going now was not the proper place to take him. I'm wondering if we should have taken him to a hospital that specializes in this type of cancer. Of course, insurance is always a consideration, and since we have a in state plan, it's hard to go "out of network". The guilt.... I've also heard/read that amputation is very rare and now I'm wondering if more could have been done to save his arm.

The doctor at the Cleveland Clinic seemed to feel U of M would be a good place to get him into; although she acknowledged MD Anderson is the top osteosarcoma hospital in the country. She was going to call U of M to find out what is open now and call me back.

More later...................

A Setback

My son let me know the end of December, 2008 his leg was bothering him and he couldn't move it to walk.  My fear deepened when I saw him take his arm to lift his leg up.  That was the same thing he was doing when he was using one arm to lift up his other before his arm was amputated. I was hoping it was just his gait being off due to the amputation.

We got him into the doctor the next day; she took X-rays, didn't see anything, but sent him for an MRI.  We met with the Orthopedic Onocologist Thursday of this week; and we got some bad news; there was now a tumor in his pelvic/hip area and it was a "decent size" according to the doctor.  I pretty much lost it in her office.  To top it all off, we changed insurance at my company and there was an insurance SNAFU where he and my daughter are not showing up as covered.  So, here they are telling me he is not showing up on my insurance, and now I find out there is another tumor.  I cried.  By the grace of God, my company allowed all kids 19 and over to be covered on a special rider if they are IRS dependent and live at home still and are single.   Otherwise, financially, I don't know what we would have done.  After several frantic phone calls between myself, my employer, the insurance company and the hospital, it finally got straighted out the next day.

Thank you God, you are great and powerful.

His chemo was held up for this weekend until this was straightened out.  He was admitted today, but we waited for 3 hours due to a room mix up.....the hospital staff gave us free coupons for lunch due to the inconvienience and he wanted to go in a wheelchair to be pushed around to go to the cafeteria...which scares me...for him to have such difficulty walking and to be in so much pain. 

That's what happened before with his arm.....I can't imagine life without my son.  I'm also worried he may eventually have his leg amputated which would be so hard for him.  

I have asked the priest why this has happened....it is always a test of faith, but God's ways are not man's ways.  It happens for reasons not known to us...primarily for someone's salvation. This is certainly a journey for us.....as a parent, I wouldn't wish this on any other parent, but I can't even imagine what my son is going through.   He is so brave, so courageous, God has truly blessed him with the strength to continue the journey.  Although yesterday, he said he didn't know why he was going back for more chemo as it wasn't working anyways.  I encouraged him to keep on fighting.....the doctors are now checking into some clinical trails for him to help him.  I pray that God continues to let him go on...please dear Lord.

How We Got Where We Are....

It all started back in July, 2008. My son came to me and said "Mom, my shoulder hurts".....I asked if he would like to go to the doctor and he said no, to get him some Ben-Gay and some Advil and we'd go from there. So, he tried that for a week, and nothing, no relief, no anything. He then went to our family doctor who took an X Ray, didn't see anything and gave him a cortisone shot in the shoulder and ordered an MRI. He couldn't do the MRI due to it being closed, so we appealed to the doctor to write another script to get him into one of the local hospitals which has an Open MRI. After 3 weeks, the doctor finally signed off. In the meantime, my son was still in quite a bit of pain and I made an appointment at an Orthopedic Surgeon's office, but he couldn't get in for a couple of weeks. He had the MRI and I had the results sent to both doctors.

I began investigating this on my own and playing "Internet Doctor". A sinking feeling overtook me as I was looking conditions up, it pointed to a tumor and it was cancer and I knew that's what it was. The Orthopedic doctor more or less confirmed it. He took his own X Rays which showed a large white shadow on the shoulder (humerus) and the Radiologist's report from the MRI which suspected a "neoplasm" and a possible "synovial sarcoma". The doctor kept saying he did not know what it was and he couldn't help us, but he would get us over to the doctor who could, but he was being very evasive about what it was. I could tell he was very concerned about my son, and when he told us "Don't hesitate to contact me if there is anything I can do for you", I knew it was bad.

I went home and looked up the doctor online and it was an Orthopedic Onocologist that specializes in "muscularskeletal tumors" so it confirmed what I had dreaded all along....my son has cancer.

When we got in to see her the next day, she confirmed it was "Osteosarcoma" which is a bone tumor. It typically happens with younger people 15-25, typically males and it begins at the long end of the bone during a growth spurt. 70% of the cases are in the knee, another 10% in the humerus and the rest are in either the pelvis, hip, jawbone, etc. She did tell him he may not make it. I will never forget that moment...my whole world felt like it was closing in on me...for my son to have cancer, it was unthinkable...it had to be some sort of a mistake, even though in my heart, I had known he had it even before he was diagnosed. It was just a sureal moment in that I could not fathom that this was happening to my child....my beautiful son who everyone loved and cherished. He was admitted to the hospital from her office to begin his journey into the world of cancer.

The next week and a half was a blur...there were CT scans, PET scans, bone scans, a biopsy, a Mediport put in, doctor's consultations and finally the dreaded chemo....a cocktail of Cisplastin and Doxarubin......they decided to keep him under the adult side of the chemo rather than the pediatric side. Everything was explained to him; the sickness, the nausea, hair falling out, throwing up, all the "possible" side effects. Some he got, some he didn't...

He was admitted for 4 cycles and actually came through it ok....the one thing we noticed was that the huge mass in his left shoulder was not going down and it was painful, very painful. He constantly rubbed it and took hoards of pain meds.....then the MRI was done again, and scans repeated....the tumor had only gone into "necrosis" by 20%....(killing the tumor)......there really was no choice but to amputate the arm...a forequarter amputation which would also take his shoulder, scalpula, etc. It was his decision...and I was never so proud of my son....the doctor turned to me to ask me, and I said "Well, it's really his decision" and he replied to the doctor "Yeah, I can do that".....just as he always did with everything he had encountered, always willing to take the challenge, always willing to make the best of a bad situation...that's my son.

The day of the surgery, he was angry, frustrated...he didn't want to go....can you just imagine how you would feel knowing you had to go to a hospital to have your arm taken off? As we sat in the waiting room, I told my son how proud I was of him, and how he had handled this whole thing with bravery and courage.

The surgery took 2 and a half hours...the doctor came and talked to us and said he made it through great...when we went up to his room to see him, he asked us all to leave, and to leave him alone....my heart broke...how hard this must have been for him to go through..and how he didn't want us there...I wanted to comfort my son...it's difficult for a mother not to be able to do that, but we had to respect his wishes.

The next few days, he was quiet but ok.....there were appointments with the prosthesis people, etc.

He now has his prothesis and will be going for PT/OT soon...

There has been one cycle of high dose methodextrate and he'll be going for another in a week...

We are scared though, he has been having severe hip pain on the same side where he received the prosthesis.....we took him back to the Orthopedic Onocologist who took her own X Rays, did not see anything but ordered an MRI to be on the safe side. We see her this Thursday to go over the results. I'm scared, very scared...I pray it's not another bone involved..

Why did this happen to my son? This cancer is very rare; only 400 cases diagnosed a year. I was always worried about my son...he was at a job he didn't like and it got increasingly difficult for him to do it. He had been having pain in the shoulder since March, 08, but did not come to me until 7/08....he told the doctor he "had waited too long".....which broke my heart...had I been able to prevent it if I had known?

Everything happens for a reason. I asked my priest...why did this happen? No one knows...it the grand scheme of things, these things happen for our salvation..whether it be mine, his, my husband or my daughters....we don't know. I have been praying to God to heal my son.

More later........................

My First Entry

I've never blogged before, but there is a first time for everything; so here goes---

Welcome to my world.  My world has forever changed since my son was diagnosed with cancer this past August.  It's a bone tumor called "Osteosarcoma".

My son has been my whole world since he was born.  He's a good kid; a good son and everyone who ever met him loves him.  I often wonder why this happened to him.   The different phases of emotions we have dealt with.  It is my faith that makes me strong; my deep belief in God.  

In between all the hospitalizations, chemo, MRI's, CT scans, blood work, tests, the amputation, the prosthesis, etc., I have somehow managed to get through it all so far.  My son is such an amazing kid; the power of God is truly working through him.

I will post more later about what our family has gone through, but I thought the journey of 1000 miles begins with one step, so this is the first step in getting everything out.