HAPPY BIRTHDAY SWEETIE!!!! ~

First and most important ~ today is Michael’s 40th birthday. So…
HAPPY 40th BIRTHDAY MICHAEL!!!! I LOVE YOU!!!!

Sorry for not updating in a while. I just don’t know where the time goes. Michael has been doing OK. After we did get home from Kansas City, it took Michael a few weeks to recover. It took about 2 weeks for him to get his pain back under control. Now he’s back to tolerating it.

We had a quiet Thanksgiving at home. Right after that, Michael caught a cold which took quite a while for him to get over. I took him to his primary care doctor and he put him on antibiotics to help him get over it. Thankfully it didn’t go into his lungs.

He is still getting those headaches. Some days the headaches keep him in bed all day. Other than that, he’s doing pretty good. His hair is growing in. As he said, he has more on his face now then on the top of his head.

Going to keep this short, I will try to update again this weekend. Please continue to keep all these beautiful, courageous people fighting this dreaded disease in your thoughts and prayers. We need to continue to fight and find a cure. Thank you again to everyone who keeps Michael and me in your thoughts and prayers. You all mean the world to us and we are forever grateful. We love all of you!!
*Hugs*
Melodie

The HOPES for Michael Celebration ~

First, I am so sorry for not updating sooner. I haven’t had much time to stop. It’s funny how things can pile up at work when you take vacation time.

Michael enjoyed every minute of his entire extended weekend in Kansas City. We left Texas late Wednesday night, arriving in Kansas City mid Thursday morning. Thursday, Michael slept most of the day. He was extremely sore from the ride up. We did stop every two hours for him to stretch. You can tell he is having pain when he takes his meds without a fight. He has taken pain meds more in the past 1 ½ weeks than in the past 6 months. Friday we just stayed at his friend’s house allowing him to rest up for Saturday.

Saturday, we had a fabulous time at Michael’s celebration. We have to thank everyone from the bottom of our hearts who took the time to show up. It meant a lot to Michael, Rebbecca, and I. We had a great turnout. We had close to 50 people show up I am guessing, I lost count. Even though many of you were not there, we did feel your spirit with us.

We had a chance to spend time with family, some we hadn’t seen in many years and a few of my family that had never had a chance to meet Michael but had been following his journey. We also had a chance to catch up with some old friends from our school days (we won’t say how many years that goes back, just remember our kids have already graduated high school). We also had a chance to meet some online friends for the first time. We have known them online for the past 3 years and they have been so supportive of Michael, it was nice to put a face to the name finally and give them a big hug for their support. We do have a few more we will be meeting up with in the very near future.

Sunday we spent the afternoon with family watching the NASCAR race in Texas. It’s kind of ironic, to watch the NASCAR race in Texas from Kansas City. After that, we went back to his friends for a nice cookout. Monday afternoon we headed back to Texas arriving home around midnight. He did say he would like to make the trip again soon. We didn’t have enough time to spend with everyone the way we wanted to. Maybe we can again after I have more vacation time built up at work after the first of the year.

It was nice to be away for the weekend. The weather in Kansas City was absolutely beautiful with mid 70’s the entire time we were there. Yes, ya’ll are welcome for us bringing the gorgeous weather up with us. We hadn’t been back to Kansas City (that is where we both grew up) in 5 years. Some things had changed, some hadn’t. It was nice to spend time with family and friends. And it was GREAT to see Michael smile. Even though he was in extreme pain, I think he has a smile on his face the entire time. Once we got home, he pretty much stayed in bed for 3 days and stayed on his pain meds. He started moving around more by this weekend.

Even though we have celebrated Michael kicking this cancer in the butt, there are many others still suffering. Yesterday, we lost another beautiful angel to this dreaded disease. Please pray for her family as they have to deal with her loss. It breaks my heart to hear of us losing these beautiful warriors. We have a few others that need our prayers. Please continue to pray for these sons, daughters, mothers, fathers, husbands, and wives who are suffering from this dreaded disease. And continue to pray for their family, that God grant them the strength needed to make it through their journey.
*Hugs*
Melodie

Kansas City ~

Hi Everyone!!~
Sorry for not updating lately. This will be short but I will update much more Sunday after Michael’s big Celebration.

We have been busy trying to get the final plans in place to get Michael to Kansas City. He is doing OK. He is still getting those headaches and still gets tired real easy. It has been nice not having to go to the doctor’s office every week or going to the hospital for treatments.

We left Texas around 11:00 Wednesday evening. Michael is one that loves to travel at night. This is something we have always done since the kids were little and now that they are grown, we will love to travel at night. We did stop every 2 hours to allow him to get out and move. We were real worried about how his back would take that long traveling. We made it to his friend’s house in Kansas City around 9:30 – 10:00 yesterday morning. We did make it in pretty good time. Of course we slept on and off most of the day. Michael is sore, but nothing we can’t handle.

Today, not real sure what the day will bring, but tomorrow…

Everyone that is in or around Kansas City need to come out to Big Q Bar-B-Que located at 2117 S. 34th Street, Kansas City, KS. We will be there tomorrow from 5:00 pm – 9:00 pm. The more the merrier. Nothing better than good BBQ, good beer, great company, and of course, Celebrating Life with Michael!! Hope to see everyone there. Of course the camera will be out so I will post pictures Sunday morning.

Please continue to keep all these beautiful warriors and their loved ones in your thoughts and prayers. Many are still fighting this dreaded disease.
Love ~
Melodie

And the Word of the Day is………

Michael went in for his CT scans on Monday and today we went to see his oncologist. His lab work was OK. It’s still down a little, but the doctor said in time it should come back up. After looking over the CT report, the doctor was happy to say that Michael is………

STABLE!!!!

Yes, we are jumping up and down. It was so nice to hear this. His oncologist had spoken with Michael’s other doctors this week. The plan is that Michael’s orthopedic surgeon will work with the neurosurgeon to order the MRI. But this will not be for 3 MONTHS…

So this means he is done. He is finished. Michael is finally FREE!!! So at this point the plan is, in three months we will call the orthopedic surgeon, schedule the MRI, and then go see all three doctors. He will have a chest X-ray every 3 months, and a CT every 6 months. We will see Michael’s oncologist every 3 months for the next year.

Once we got home, we realized, we were so happy, we forgot to ask about getting his port out. Michael will call his oncologist back tomorrow to see if we can get it out yet. Michael will take it one day at a time as he is still fighting fatigue, headaches, and other side effects.

HOPES for Michael CELEBRATION!!!!
So we can officially say we will be having the HOPES for Michael CELEBRATION in Kansas City. So mark your calendars and meet us there.
When: November 7, 2009
Where: Big Q Bar-B-Que, Kansas City, KS

I will update later with the complete details. We will also be posting an event from Michael’s group page on facebook.

Michael will take it one day at a time as he is still fighting fatigue, headaches, and other side effects.

Yes, we are happy at the moment. But at the same time, we can never loose site of those still fighting this dreaded disease. Please continue to keep all these beautiful warriors in your thoughts and prayers. And let’s continue to fight to find a cure.
Sending our love to everyone,
Melodie

Latest Update ~

Sorry for not updating in a while. Things never slow down. This may be a little long so sit back and get comfy!!

MICHAEL ~
Michael is doing OK. He went in for his labs again on the 28th. They were low as expected. He still gets tired very easy and has been fighting a bad cold for the past week. Luckily no fever!! Thursday (10/28) was his 21st day since his last treatment and would have been his day to go back. We did a small happy dance that we did not have to go check in for his treatment.

On a different note, this week was the first week since the end of May that I worked 5 days. Oh well, I will make up for it next week (only working 3). Tomorrow Michael goes in for his CT scan and we will meet with his oncologist on Thursday. We will go over his scan and hopefully by that time, he and neurosurgeon will have discussed what MRI scans they are wanting and when we will go have that done. After the MRI we will have his 1 year follow up with the neurosurgeon (a little late, but that’s OK). And once we hear “NED” (that is all we want to hear) then he will only gets scans and visits every 3 months.

The fun part, now that treatment is over, is going to keep him from over-doing it. He has it in his head that he is ready to go back to work. NOT… He is no where near ready.

CELEBRATION ~
A fun note, we are still working on some details for his CELEBRATION in Kansas City. We are looking at November 7th. Once I have the final details, I will be sending out the invites through his “HOPES for Michael” group page on facebook, through email invites, and through is page here. So pencil in on your calendar November 7th, “CELEBRATING HOPES for Michael”

OTHER SARCOMA FAMILIES ~
This week, a beautiful angel, Sammie, had earned her wings. Please continue to keep her family in your thoughts and prayers. Also, if you could lift up Jessica’s family; here is another beautiful warrior about to earn her wings.

Little Miss Laurren is still down in Mexico getting her treatment. Please continue to pray for her and her family. Also her wonderful home town is going to have “Christmas in October” for her on October 25th. If you are interested in helping, let me know. Michael and I are planning to attend. You can also find more information about this event at Laurren Smith Foundation.

This week, I had also read an update from Rhonda, the beautiful wife of Bryan who is continuing to struggle with this dreaded disease. But what she said is so very true. So I am going to continue her vent for her so if anyone is going to get offended as she stated in her update, then close your explorer now.

As Rhonda says, just because they are “cancer free” does NOT mean that everything goes back to normal. She is so right. Here is a family, whose husband, father can no longer work. They still struggle day to day trying to get through. They are at the end of their ropes in so many ways and need help. As a wife, she can only do so much. She has asked for help. This is a time where you really see who is your friends.

Currently two of our biggest care pages cheerleaders have stepped up to help. Please check out what they are doing. The “Wonder Aunts” (yes Aunt Lynda, I am giving the Texas Aunts a new name) are going to be holding a fundraising garage sale down in Sugar Land, TX. Check out Brittne's page. Even if you don’t live close, you can still help. Also Check out Supportnick's page. Kelly Olson, Andrea’s daughter is graciously stepping up to help. She too is going to hold a fundraising garage sale in Phoenix.

As I was talking to one of my very close friends about this (why does it feel like friends begin to abandon us), she told me this. As a person going through what we are, we know exactly what each other is saying. We may not know word for word what we are experiencing, but its pretty close. As a wife going through this myself, I can relate to the other wives. It’s a little harder to relate to the mothers going through this. We can not relate on the mom side, but the caregiver side. As a friend, they are there, they do care for us, but really have no idea what we go through daily and frankly at times, they are scared.

THESE BEAUTIFUL MEN FIGHTING THIS
Currently we have Michael, George, Bryan, Mike, Steve, Jonathan (I know there are more but my mind just went blank) that are men, dads, husbands fighting this. There are also women, moms, and wives who are fighting this too along with all the children. I am not leaving you out, but want to focus on these brave men. These are the “MAN OF THE HOUSE”. They are always the one to take care of the family and when they get sick, you take every little ounce of dignity away from them. They have a feeling that is indescribable to us. They can no longer be the “MAN” of the house. Here is the strongest person in our life and he becomes weak and fragile. He is supposed to protect us from the world. And right now, we have to care for and protect them.

Some of us were a 2 income family going down to one or half (depending if the wife can still work full time). Some of us, the man was the sole income and now the wife has to go out and get a job and that job no where matches the income they had. Then there is the health insurance. If any is like Michael, he carried his health insurance, got fired and now we have to pay COBRA (not cheap). Yeah there is social security disability, but did you know it takes 2 years for Medicare to kick in?

This is a childhood cancer, and it breaks my heart to read about the beautiful children, however, these cancers occurs regularly, randomly, and spares no ethnic group, socioeconomic class, geographic region, or age group. It can occur in ANYONE. The cause of most childhood cancers are unknown and at present, cannot be prevented. The research out there is very little. These cancers need to have more research done. With that, my husband, who is 39 years old, is fighting for his life with Ewing’s Sarcoma. They told us in the beginning there isn’t really a treatment geared toward the older people with this. He took a kids’ dosage, which his body may reject. The funny part is I don’t look at it as we are old, but with this cancer, he is.

When Michael was first diagnosed, we looked high and low for assistance. He was turned down by so many. He is not a child. He is not a woman with breast cancer. He does not have breast cancer. He is not elderly. He is a middle aged man who should not be sick. Right, a middle aged man that is suppose to support his family. But he did get sick. He had to stop working. He no longer felt like the man of the house. He could no longer be the rock of the family. He had to take on this treatment that frankly sucked the life out of him. But my husband still tries to make light of it. As Michael says, what can you do, we must deal with what we are handed. There is nothing we can do to change the fact he has cancer.

We did get some assistance in the beginning, and we are still forever grateful to those that did help, but it only goes so far. We still lost our house and our land. We still have unpaid bills haunting us from then. Even with insurance, we still have an extremely huge stack of medical bills. Yes, I work, but if I don’t go to work, I don’t get paid. My boss has been wonderful to work with me so I can go to every appointment, every scan, and every treatment with him. I track every little think that goes on with him. Michael and I stress every day over money. Yes, we have a place to stay for now. But you never know things could change in a heartbeat. I know money is tight all around and we can only make the best of the situation we are in. But there is only so much a person can take.

IS THIS NORMAL
Once a family gets a diagnosis like this, their world gets turned upside down. I was asked if this is the normal now or will we ever go back to normal. Here is how I responded:

“Is this our normal? For now it seems to be. But I always remember what Michael says... What can we do? This is how it is and we just need to make the most of it. He says he can't change anything, so let's enjoy what we can. The one thing he has taken from this is you can not take things for granted anymore and to make the most of it and have fun doing it.

If you were to know Michael before, he is an extremely private man. He would laugh and joke with you only if he knew you. He would NEVER have been caught dead with green hair. At first he did not even like me talking about what he was going through on the internet. He didn't even like me talking about it to people he knew. That was private stuff and needed to stay that way. He changed. He opened his eyes to the fact that life is short and we need to enjoy what we have today. Now he does the green hair, he talks to complete strangers; he even now bonds with strangers. He even told me to quit sugar coating his updates. There are still a few things I will not post... Mostly my fears and what I would say is personal stuff.

I guess what I am trying to say is normal is what we make it. Yes, I am scared every single day with Michael. I read other updates and hear of those that are done; just doing scans every 3 months. I see those who have relapses and relapses. I see those parents hanging on to every last moment with their babies. What is in store for Michael and me, only God knows and we have accepted that and we live each day filled with love and laughter. This year long battle has not been easy on us at all.”

TO ALL THE FRIENDS OUT THERE:
(Please feel free to copy and paste to your pages) Cancer is an extremely ugly disease. You must understand that this will be a part of our lives FOREVER. Even after treatment, we are not in the clear. We have scans every 3 months. This cancer can and will come back at anytime. Some of these men will never be the same. They can not work. But they are our men and we will stand by them and support them with or without you. I am sure some of you are tired of hearing the same ole’ thing about your friend and begin to distance yourselves. Please do something little to show you still care. The little things are the greatest things.

Cook a dinner for the family. Give a small gift card. Do you know a $25 dollar gift card to anywhere would mean to world to some. Offer a great big hug and a shoulder to cry on, yes you heard it all but a good cry for us will give us the strength to continue to move. To those with little ones, offer to watch them for a few hours. Just a few hours would be the world. Take the wife out for a nice manicure and pedicure. These don’t cost much. For him, take him fishing or take him out for a fun man’s night out. Yes, we might worry, but at least you are showing him you are still there. There are many other little things you can do. Yes, it does not help with the financial burdens we are suffering, but it does still show you care.

I have heard many say well try to do fundraisers or establish a medical fund. Some are better at doing this than others. Some of us don’t even know how to start these. And as the caregiver and patient, we sometimes have too much on our plates to do this. So as a friend, if you are good with this in anyway, offer that assistance to the family. Or get a group of friends together and come up with the ideas.

Ok, I will stop for now. As always, please continue to pray for all our beautiful sarcoma warriors. They all need our extra prayers. We love each of them and we need to continue to lift them up. Also, please continue to pray for a cure. And thank you once again for all the prayers and words of encouragement from everyone. We love all of you!!!!
Melodie

Prayer Warriors Needed ~

Prayer Warriors Needed ~

This morning I received my normal little news update email from our local NBC news station with a very interesting title. "I Prayed for God to Give Me a Positive Attitude" A 13-year-old girl in Kaufman County recently learned she has just months to live.

This caught my eye and I had to read. Here is a little girl, right in my back yard needing our help and prayers. She is battling Osteosarcoma which has returned twice. Of course I cried as I read it. I hate seeing another child with this dreaded disease. I searched and search and have come across her caringbridge page. This beautiful little girls needs are help. Please pray for her and her family during this time.

LaurrenSmith

On a lighter side, Michael is doing OK. He is still pretty tired but he is determined to get up and go. He is so ready to get these scans out of the way.

As always, please continue to pray for all our beautiful sarcoma warriors. They all need our extra prayers tonight.

Melodie

Waiting and Waiting ~

Michael did fairly well the last three days with his treatment. He had a little nausea each day, but nothing we could not control. His fatigue has really sat in. Right now we are playing the waiting game. We are still at the hospital waiting on getting his Nuelasta shot. He’s not scheduled to get it until 5:00 this evening so we wait and wait. I could take him home and return in the morning for his shot, but waiting would just be easier with the drive we have and once I get him home, he don’t move for a few days.

Michael had some visitors this time while we were here. On Thursday, Rachel and David came by and we had a great visit with them. They are the young couple we met during Michael’s 4th treatment. Rachel has Ewing’s in the pelvic. She is an amazing young woman with great strength, spirit, and faith to overcome this. It was nice to see her and Michael share their stories and Michael offering his thoughts to her. Depending on how his stomach feels today, we are going to try to stop in and see them before we leave.

Yesterday, he had a visit from his nieces, Lily (4) and Tona (2). Our daughter tagged along with them, which gave Michael a chance to pick on her. This was the first time the little ones got a chance to come see Uncle Mike. They know each time he goes in for his medicine and comes home not feeling well.

When they got here I took them to the gift shop for them to get Michael some balloons. They each picked him up a little stuffed animal each which they took home with them to be safe. The big balloon actually sings “Celebrate” so Lily had fun turning it on and on having a “show” for everyone. She even had a show for Michael’s aide.

We are extremely excited for this to be his very last treatment. On one hand, we are so happy to get past this every three week cycle of hospital, recovery, a week of being able to do a little to starting all over. But on the other hand, he has had some of the nicest nurses and aides taking care of him. With Michael’s humor, they all love him. I don’t think there is a single nurse / aide he didn’t get along with. To all you ladies, and one gentleman, you are truly amazing people and you all show the love and compassion needed, not just to the patient but to the family as well. We can never thank you enough. Don’t worry, Michael has not left ya’ll forever, you know he WILL be back to pick on ya!! We love you guys!!

This evening, I will take him home, he will do his normal go to his room and stay in there until about Tuesday or Wednesday, and then he will start working on slowing building back his strength. We should begin his various scans and doctors’ appointments in three weeks.

Once we are done, watch out Kansas City because here we come and there will be one great big CELEBRATION. We have so many family and friends in Kansas City that we have not been able to see in quite a while; we felt this would be the best place. We also ask those of you in Kansas City also fighting sarcoma, please join us. We have been watching, praying, and following your journeys and we know some of you have been following Michael’s and we consider you as family too.

We will continue to update each of you on Michael’s progress, scans, and of course the PARTY. Michael and I each have a facebook and once we have a date set for his PARTY, we will be sending out an Event Invitation. If you would like to friend us, please send an invite. We would love it. (Michael Irwin, yes the Michael with the green hair or Melodie Irwin)

Please continue to pray for all our beautiful sarcoma warriors. We love each of them and we need to continue to lift them up. Also, please continue to pray for a cure. I will update everyone later to let you know he is home. And thank you once again for all the prayers and words of encouragement from everyone. We love all of you!!!!
Melodie

LAST TREATMENT!!!!! ~

Just a quick updated!!
Yes, we just checked Michael into the Jackson Building for the last time about an hour ago. We are waiting for the pharmacy to get his chemo up to the floor. We are excited to get this weekend over.

We spoke with his doctor this morning and discussed his plan. At this point he would like for Michel to get through his chemo this weekend, go in for labs / doctor visit in 10 days and go for his CT Scans in 3 weeks. We will then go see his oncologist in 4 weeks, go through the CT Scans and discuss with Michael’s neurosurgeon the CT scans and what MRI’s he wants Michael to have. Then go in for his MRI’s and have a follow up visit with his neurosurgeon. Then if all looks good, remove the port. Still about 6 weeks of appointments and tests but we are at the end.

We will update everyone later. Please continue to keep all our sarcoma warriors in your thoughts and prayers.

Michael Update ~

Michael stayed down for a few days with his skin pain and other side effects. He was up and moving around by Thursday. He is still weak at times, but is managing to get around.

Michael is going to kill me for this story, but I have to tell it.

Sunday, my lovely husband was outside in the shop helping my dad work on a car and hit the top of his head. He was down in front of the car and his leg started to cramp. When he tried to stand up, he hit is head on what we think was the engine hoist (yes a large metal pipe). He went down and luckily my dad was right there and was able to help him down easily It did knocked him out for a few seconds. I just happened to be walking out there as I saw my dad and brother trying to help Michael into a chair. It was a site considering Michael is 6’2” and around 250 and my dad and brother are 5’7” and 5’10” and not very big.

He did not cut his head open (thank you god) and we continued to monitor him through the night as he was playing stubborn and didn’t want to go into the ER. Only thing he had was a severe headache and his shoulders were hurting. He did later complain a little of the left jaw, ear being sore to touch and when he ate. Of course, later Sunday evening they were back out there putting the parts of the car back together. Yes, I was out there like a mother watching / helping every step of the way. Monday, I would not let him out of my site for even a second.

Tuesday we went in for his labs. We normally wait around for them and talk with his nurse and doctor. When we walked back to see his nurse, his doctor was standing right there. He asked how’s the labs, and the nurse began pulling them up. Then he asked Michael how he has been doing. It’s funny, when we do see the doctor, he never looks at Michael anymore to see how he is doing, and he always looks at me for an answer. Michael drops his head, not to look at the doctor. I told doc what had happened on Sunday and he pulled off Michael’s hat. Of course that hurt, so he put Michael into an exam room. He looked over Michael’s head and went to get his lab results.

Michael’s labs were actually not too bad for where he is at in his cycle. They looked pretty good. So his doctor sent him down for a CT of the head. He wanted to make sure the contusion was above the skull and not between the skull and brain. If his counts weren’t that great, he was going to give him a transfusion to help with the contusion.

Finally the doctor did call with the results of the CT scan. Michael has a very large contusion above the skull. He will have another CT scan when we admit him on Thursday for his LAST treatment (yes I said last, we are so excited) to make sure it is going down. He said as large as the contusion is, Michael will probably have a headache and his shoulder will continue to be sore for a few weeks.

Wednesday, Rebbecca and I both came down with some nasty stomach bug. Let me tell you, I do not wish that on anyone. I am not one to get sick, but that was awful. I am still fighting headaches on and off, but it is that lovely time of the year for my allergies.

Michael is coming up with some big plans for Thursday for his doctors and nurses when we get ready to check in to the Jackson Building. I will keep them a secret for now; don’t want to ruin the surprises. If you know Michael, he can be a big prankster. Let’s just say I will have the camera and computer ready to update once we get there.

As always, please continue to keep all those beautiful people, our sarcoma friends and everyone fighting any cancer in your prayers and let’s pray for a cure!!

Home Sweet Home ~

Sorry for not updating sooner. Michael was able to get his Nuelasta shot around noon yesterday so I was able to get Michael home around 1:00. Once we did get home, he stayed in bed all day. This morning he started with the skin pain around his shoulders. By this afternoon, he pretty much felt it all over. We are just hoping this don’t last very long.

On a good note, Michael only has ONE more treatment left. If things look good over the next few weeks, we will check him in to the Jackson building for the last time on September 17th. Then we will schedule all his scans after that. If all is good after that, we will be planning 2 celebrations for Michael. We will plan one here for all our family and friends and one back home in Kansas City. I will give details closer to October.

As always please continue to keep all those fighting this dreaded disease and all other cancers in your prayers. And thanks for all the encouraging words everyone has left for Michael through his websites, facebook, and emails. He really does appreciate every one of them.

Treatment Update ~

His treatments are going ok. On Thursday, they did get him started around 1:00 so he was able to finish around 2am. That evening, he started with a headache and his nausea kicked in enough he had to ask for some anti-nausea meds. It took about 3 hours to finally get it all under control. His fatigue is setting in as well. It didn’t help to listen to the jackhammers all night. They have been working on the parking lot outside the building for the past 2 months and Thursday night, they decided to pull an all night work out there with the big lights shining through the windows.

Friday he seemed to do a little better. They started around 1:00 again. He did experience some nausea again, but was able to control it on his own. He really doesn’t like taking the anti-nausea meds as it makes him real loopy.

He’s resting now. The doctor this morning said he would move his treatment up an hour or so to help get us out the door a little earlier tomorrow. One more day to go this round, he’s hoping to keep the side-effects away again.

As always, please continue to keep all those beautiful people, our sarcoma friends and everyone fighting any cancer in your prayers.

One Year ~ Chemo Treatment ~ The Celebration

Today marks 1 year. One year ago today, I was sitting in a chair (as I do today) next to his bed wondering what was going to happen. Michael unable to walk and the pain he had experienced that week was so excruciating. I will never forget hearing those words; Michael has a tumor located inside his spinal cord. I don’t think I will ever forget that entire week. I remember thinking will they be able to make my husband walk again? Will I lose my husband? So many thoughts ran through my head. We both were so scared.

I remember crying the entire ride home that night (it’s an hour ride) wondering how I was going to tell our children. I don’t really remember how I told them; I do remember asking them both to skip school the next day so they could go to the hospital with me to talk with the team of doctors caring for their dad. I told them they could take me to lunch in the hospital cafeteria for my birthday. Food always work.

Of course once we did get the pathology back on his tumor (which did take a while due to testing and re-testing), it was not what anyone expected.

So much has happened with Michael and me over the past year. Cancer totally changes your life. Within the past year, we have had many low points. We lost our home, Michael lost his job, and many more things, too many to mention. There have been several times Michael wanted to give up, but NEVER did. He has been a true fighter.

There have been good things out of this dreaded disease. Michael and I have grown closer than we could ever imagine. Michael and I have been together 21 years and already had a very strong relationship. We were able to watch our two beautiful children graduate high school and enjoy it. We have watched our son take off to the real world on his own. He will be starting his freshman year of college on Monday at Stephen F. Austin State University in East Texas.

And for me, I am truly amazed everyday at the fight that my husband has put up. To sit here and watch him go through treatment, to see the pain he is in through out the week, to watch him not give up on anything. He has not let cancer get in his way. He may have to use his cane at times just to get around, he may go days with little to no sleep, he may not feel like doing a thing, but he still gets up everyday and pushes on. He will not be stopped by anything. He WILL kick cancer in the butt by the time we are done.

CHEMO TREATMENT SECOND TO LAST ONE!!!
This morning we went to the doctor’s office to get his labs drawn and see the doctor. Our daughter Rebbecca came with us to spend the day with her dad. His labs are OK, not the greatest, but still good enough for treatment. While we were leaving the office to come to the Jackson building to check in, we saw David and Rachel (the young couple we met last time Michael has chemo) waiting to get Rachel’s labs. We stopped to speak with them. What a joy to finally meet Rachel. She looked well. They did say once they were done there, they too where on their way to the Jackson building for her in-patient treatment. We hope to catch up with them while we are here. Michael is in room J229 again. So far, Michael is doing rather well with his treatment. We will update everyone later.

THE CELEBRATION
Today for lunch I asked a few girlfriends from work to come up to the hospital to help me celebrate with Michael his 1 year of being a SURVIVOR. I ordered a few party trays from Jason’s Deli and ordered the most delicious cupcakes from a girl I work with. She has cupcake business and she makes the best cupcakes. I kept it quiet from Michael for the past 3 weeks.

One of them called me when they got here and I told Michael I was going out to the truck to get something to drink. I met them and helped them bring up the goodies. Let’s just way when the 4 of us walked back in he was surprised. He had to wait a few minutes to begin his celebration as the nurses where accessing his port when we walked in. Once he was hooked up, we sat and enjoyed good food and great conversation. Thanks girls for making this a great day for Michael. He had a wonderful time. Becky, Judy and Tish you are the best. Check out Michael’s carepages to see pictures from today.

Please continue to keep those fighting this dreaded disease in your prayers and their families. Also say an extra prayer for those parents who have recently lost their child to this disease. Michael (cp: michaeederer) and Maddeson (cp: MaddesonsFight) earned their wings this week. We need to find a cure for this disease. It’s hard to watch your loved one go through this, but it is not right to have to lose your child like this.

Just a Quick Michael Update ~

Michael did so well during his last treatment, but once I got him home, the fatigue really took over. He was extremely out of it for the first few days. This time, he had a “new” side effect. We are not sure from what, but we will watch it and see. About Monday evening his skin hurt. The slightest pressure anywhere and his skin would hurt all over his body. This lasted until about Wednesday, and then went away. This is the first time he experienced anything like this. We were able to keep the bone pain under control this time. He had some difficulty walking at times, but seems to be coming around.

We went to get his labs yesterday. Can we say YEAH!!! No transfusion!! His hemoglobin is up to 8.7. His platelets are low and of course his white counts are down. After getting is results and speaking with his nurse, we went over to his appointment with his Radiation Oncologist. He said Michael is looking pretty good.

Next Thursday we will go into see the doctor early that morning, get his labs drawn and if all looks good, go over and check in for his second to last chemo treatment. Only 2 more to go!!!

As always, please continue to keep all those beautiful people, our sarcoma friends and everyone fighting any cancer in your prayers. And thanks for encouraging words. Know that Michael really does enjoy every one of them.

We are Home ~

Finally, I got Michael home about 3 - 4 hours ago. He is resting comfortably at the moment. Throughout this treatment this time, he looked and felt fairly good. As the afternoon started to turn into evening, you can see the fatigue really begin to set in.

Today, they actually gave Michael 2 shots. He received his normal Nuelasta shot, but he also received a shot of Procuit to help increase his red blood cells. His hemoglobin was down to 8.2 this morning. His white counts still look good right now at 4.1K and his platelets are at 125. I will take him back to the doctor’s office next week to check his blood counts again. We do have a follow up appointment with his radiation oncologist this week. We are going to see if we can get it re-scheduled to the same day as we have to go in for labs. I will keep you posted.

OK, I have a very special request to all the prayer warriors around the world. Michael and I are not ones that will go through the oncology floor and speak with others. We mostly stay to ourselves. But today, Michael and I met a young man, David, whose wife, Rachel Smith, was just diagnosed with Ewing’s Sarcoma in her pelvic. From what we understand, they just received her diagnosis last week and already receiving her first round of in-patient chemo this weekend. Please say extra prayers for them this evening. Both are overwhelmed with being recently diagnosed.

You could see the “lost look” in his face, yet at the same time, when I looked at Michael, you could see in his face he was sharing his experience with this man, and it was so amazing. Just to see Michael explain to him what he goes through and what he could possibly expect for his wife. I hope we didn’t scare him more than he was.

As Jessica spoke of in her update (cp: Jill2008) about the “walking around in a fog” when we each first received the news of our loved one, we all can relate to the emotional roller coaster they must be feeling right now. Michael’s and my heart go out to this couple. We gave him our contact information and hope they stay in contact with us and eventually come to the place I referred him to as a truly wonderful support system, the carepages family. I may not comment on everyone’s pages very often, but each of you have helped us in one way or another by sharing your stories. Each of our stories is different, yet are the same and I may not have said it but THANK YOU for being here for us.

As always, please continue to keep all those beautiful people, our sarcoma friends and all the others fighting any cancer in your prayers tonight. We will update you again soon!!

Chemo Update ~

Chemo seems to be going pretty good for Michael this round. We have just started his day 3 pre-meds. The first two days he has had very minimal nausea and no real headaches. Besides the late start on the first day causing each day to be a late night, I would say this is one of the better times he has had. He is just now starting to show signs of fatigue, but that too can be from the late nights.

We did get the results back from his chest x-ray and echocardiogram, ALL LOOKS GOOD. His heart looks great and so does his chest. Doctors say it is just his “chemo cough” and the racing heart feeling when he does do a little bit could just be when his counts are low and is extreme fatigue. We just can’t keep Michael down at all and he needs to learn to rest a little more. Yeah right!

Hopefully tonight will go without any real side-effects as well. Tomorrow he will get his Nuelasta shot, but he will not get that until tomorrow evening, so we will head home after dinner.

We ask that everyone continues to keep all the beautiful people fighting cancer in their prayers.

Update ~

A few months ago, Michael and I designed a wristband to show our support in his journey. We have already given a few out to our closest family and friends. We are going to be selling them for $5.00 each. If anyone is interested, please send me an email. We are still in the process of getting a website set up to sell them on. I will update everyone once we have it up and running.

Michael’s day’s in-between his treatments have been up and down. He has been experiencing shortness of breath and at times he says it feels like his heart is going to beat out of his chest. At times he would feel like this just walking up and down the stairs at home. So today the doctor ran the echocardiogram to compare with the one he had last October. The doctor also ordered a chest x-ray to check out his cough. It seems to be getting worse.

On his good days, he would go out to the shop and tinker around with the cars or try to help dad around the house. A few times, our 2 nieces (ages 4 and 2) and nephew (age 2) would talk him into going swimming after dinner. It was nice to see him in the pool. It did do him some good, but he would be tired for a few days.

We have a new nephew (Anthony William) who came into this world two weeks ago. Little guy has pulmonary valve stenosis. He will be having his procedure on Monday to correct it. Please say an extra little prayer for Anthony. I know mommy, daddy, and his big sisters would appreciate them!!

We are coming up on his one year pretty quick. So the plan is to have this in-patient chemo over the weekend and then we will only have 2 more cycles. YEAH… We are happy. We can see the end of treatments. This would have Michael finishing treatments mid to late September He will have all his scans ran again, get those great words that things still look wonderful, no tumor, and be done with treatments. Then we will celebrate!! No big plans yet, I have a few ideas I am tossing around but still need to get with those I am going to be calling on to help.

Day 1 of Chemo~
Again, pretty uneventful. He went down for his x-ray and they came in and ran his echocardiogram. They got his chemo started around 2:00 today. No real nausea today. Just giving the nurses a hard time. He should be finished around 2:30 in the morning.

I will give an update tomorrow. Please continue to keep all those fighting cancer in your prayers.

Update and Next Chemo ~

Sorry for not updating in a while, but this is going to be a quick update for right now... It seems we have been busy non-stop since his last treatment. Between our nieces and nephew, a new nephew arriving, swimming, animals, working, keeping an eye on Michael (he’s had his good days and bad), and just trying to get through each day, it seems these last few weeks have flown by.

We did see the doctor this morning and had his labs again. His counts look great so this morning we checked in to the Jackson Building here at Texas Health Presbyterian Hospital in Dallas. We are once again in Michael’s room, J229. He will have a few tests today; the doctor wants a chest x-ray and also ordered an echocardiogram. On a good note, the doctor did say that after we complete this chemo, his goal will be to get 2 more in. So we do see an end in sight. Mid-September and Michael will be DONE!!!

I will update everyone again this evening. Please continue to keep these beautiful people fighting cancer in your thoughts and prayers.

We are Home ~

Finally have Michael home and settled in for the night.

Day 3 was pretty much the same as the other 2 days; late start, minimal nausea, up most of the night, etc. I was able to get Michael to take a nice walk outside yesterday before he started his treatment. It was a beautiful day. Well as beautiful as it can get in Texas (high 80’s to low 90’s).

We woke up this morning and had everything packed by 10:30 and waited. And waited and waited. We had to wait for Michael to get his Nuelasta shot. With Michael getting his treatment so late, his Nuelasta shot was not scheduled until 10:00 this evening. We did talk the “on-call” doctor filling in to move it up earlier. He was able to get his shot at 4:45. We got home around 6:00 this evening.

We were able to make it home with no Ativan and not pink bucket. However, once we did get home, he had nausea. He is also having some minimal pain. We will see how he does through the night.

We continue to keep each of you in our daily thoughts and prayers and we ask that everyone keep all these beautiful people fighting this dreaded disease in their prayers as well.

Day 2 and “International Sarcoma Awareness Week Begins” ~

Day 2 went pretty uneventful this time which is a good thing. He actually did get some rest while getting his treatment. He was unhooked around 4:30 this morning. Just minimal nausea is all. Still no headaches today (for both of us) which is good. They will hook him back up to Wall-e around 4:00 today. They are only going to do a 3-day cycle. This seems to be the best one for him. The doctors felt that the 4th day was just a little much on his counts this time and don’t even want to attempt the 5th day. So today will be his last day for chemo and we will get his Nuelasta shot tomorrow. Due to the last start each day, he will not be able to get his shot until tomorrow evening. So we will be here until tomorrow evening. That’s ok.

Today begins International Sarcoma Awareness Week. Here is a link to see if any events are in your area. www.team-sarcoma.net. Unfortunately, we don’t have any events close to us and Michael is still stuck in the hospital (at least those are his words). You can go out and support these events through facebook also.

We will begin day 3 around 4:00 today. Let’s just hope it is as uneventful as last night / this morning. Hope everyone has a great day and for those of you here in North Texas, enjoy the nice weather. At least we won’t have the triple digits… Maybe I can talk Michael into taking a walk outside before he gets hooked up to Wall-e.

We continue to keep everyone in our thoughts and prayers. We pray everyone having an event today for Team Sarcoma has a wonderful time and a great turnout. We can’t wait to see pictures.

Day 1 is in the Books ~

Well, we were hoping to get his treatments started early, but for some reason, he didn’t get his treatment started until 4:00. With all the hydration, pre-meds, and post-meds, his treatment usually lasts 12 hours. He didn’t get done until around 5:30 this morning, so we are both pretty tired. It makes it real hard to get any sleep when Wall-e begins to beep. He only had a little nausea this morning. His stomach is bothering him a bit but we hope it’s nothing. He’s already doesn’t want to eat much. Luckily he doesn’t really have a headache. I think he gave it to me so I am not a very cheerful visitor for him, or maybe he likes it that way since I am not talking much… You know how men can be… (Love ya sweetie!!)

They did get him started at 4:00 to begin his “Day 2”. He is getting his “red cheeks” from the steroids in one of the pre-meds, so they are bringing him his benadryl. Hopefully he will get a little sleep.

We do thank everyone for the kind words of encouragement to Michael. He does enjoy each and over one of them. We continue to keep each of you in our thoughts and prayers.

Quick Update ~

Hi all, found a typo in my previous update, Michael is in room J229 again. Fingers must not have been working very well today.

Anyways, looks like we are going to have long nights this time around. Michael didn’t get hooked up to Wall-e (that’s what he calls his IV pole) until 4:00 this afternoon. Not sure what the delay was. This means that he won’t finish up his last post-meds until 4:00 in the morning. Then of course shortly after that is the time they usually come in to draw his labs.

I will try to update either later tonight or in the morning. We continue to keep everyone in our thoughts and prayers.

Checking in for Next Chemo ~

Just a quick note, we will update again later this evening.

Took Michael this morning to his doctor’s appointment and had his labs drawn. The doctor is pleased with where his counts are at. His white blood count is 4K and his platelet is at 148, so over to the Jackson building to check in for chemo. We are in room J239 again. We have checked in and waiting for them to get the meds to come back up from the pharmacy so he can begin. We are hoping to get started soon so he can hopefully get some quiet through the night.

Michael hasn’t been feeling the greatest this week. He did have a slight fever earlier in the week and we think a touch of a stomach bug. He seems to feel a little better, just to come in and feel horrible again.

Please pray for minimal side-effects again this time and continue to pray for all our beautiful cancer warriors out there.

Just a Quick Update ~

Took Michael in to see the doctor today and get his labs done. As expected, he counts are very low. Right now is white blood count is at .8K and his platelets are at 29. He is low but not low enough for a transfusion. We will continue to monitor him though the week. Of course, any changes, fever, etc. I will take him back into the doctor. He is still on his antibiotics the doctor had him start last Thursday. They did look in his mouth and right now doesn’t see anything of concern. We will continue to give him some pain medicine to help ease the pain and to use his “miracle” mouthwash.

This evening we are having a hard time controlling his headache. Right now his is resting comfortably in his chair so I am going to let him sleep.

We continue to keep each of you in our thoughts and prayers.

4th of July Weekend & Our Son’s 18th Birthday ~

First, we want to wish our son a Happy 18th Birthday! Today our youngest turned 18. It’s amazing to see your children grow up to young adults. Happy Birthday Michael!! We are so proud of your accomplishments! We love you from the bottom of our hearts and wish you nothing but continued success in your life.

Next, we hope everyone had a wonderful 4th of July. We had a nice one. A little lay back than most years. We only had a few family members come up from the Houston area instead of our big 4th of July Celebration. We had some great food and a small fireworks show. This year Michael got to “watch” the fireworks. Normally he is the one producing the show for our family and friends, but since he’s in-between treatments, he was not up to it. Our daughter and I got to have fun with the fireworks. I think she had a great time. I must say, it was fun but it is not the same as watching.

Michael is doing ok. He has his moments. He was running a slight fever earlier this week. He is still having the headaches and still has difficulty sleeping. He is still having pains in his back and legs. This time, his teeth and gums are bothering him pretty bad. You can see where his gums have changed some in a few places. Today he is starting to feel the effects of the Nuelasta shot, but so far it’s not too bad. He is in pretty good spirits for the most part.

Tomorrow we go in for his lab work and see the doctor. I will try to update everyone later. We pray everyone has a safe, fun, wonderful weekend. And oh yea and one more time ~ HAPPY BIRTHDAY MICHAEL!! WE LOVE YOU!!

Michael’s Home!! ~

I was able to bring Michael home this morning. We seen the doctor this morning, discussed our schedule for the next few weeks, and he said Michael could get his Nuelasta shot and go home. We packed in a hurry and ready to go by 9am.

Michael counts look pretty good right now. Michael will start antibiotics on Thursday. We have a doctor’s appointment in next Monday and will have labs. We will do labs again on the morning of July 16th at the doctor’s office again and if all looks good; we will begin his next round of chemo. By having labs at the doctor’s office then admitting, things ran much smoother this round.

He had no nausea on our drive home. The pink bucket didn’t even ride home with us. I guess after 21 years he is finally getting use to my driving. Once he did get home, he has been trying to sleep on and off. He did have some nausea around dinner time, but we were able to control it. He is still getting the headaches, but those too we are keeping at a control. He looks pretty tired right now. Hopefully he can get some sleep now that we are home in our own bed.

Sending prayers to all your beautiful people fighting this dreaded disease.

Day # 4 ~

Not much more to update today, all we have left for Day 4 is his last dose of Mesna at 11:00 tonight. Michael is feeling more and more tired. He has had little nausea today and foods have no taste when he does try to eat. His legs are still bothering him. He has been able to keep the headaches under control. The key for him is to catch it in time. He is still having troubles sleeping. He usually can not sleep much longer than an hour or two at a time.

We are hoping when we see the doctor tomorrow, he will let him get his Nuelasta shot fairly early so I can take him home in the morning. I do know the doctor said on Friday that he will be sending Michael home with antibiotics and possibly a sleep aid. If all goes well, I will give another update once I get Michael home tomorrow.

Thanks to all the kind words you send to Michael. He does appreciate each of them. I make sure he gets them, from the emails, those posted on his websites, those in each of our facebook pages, or even those tweets he gets. Sending thoughts and prayers out to each of you!!

Cycle 7, Day 3 ~

Just another short update, day 3 is almost in the books. Nothing to exciting to post tonight, the day has been pretty uneventful again (which is a good thing). All we have left for the day is Michael’s last dose of Mesna which he is supposed to get at midnight tonight. His day hasn’t been too bad. He’s having minimal side effects including a little nausea and is still having the uneasiness in his legs. They were able to keep him pretty much on schedule again, just a little off during shift change this evening. Not too bad for having a full house this weekend.

As I sit here and watch him, you can just see the fatigue set in more and more. You bring your loved one in for treatment, but as each hour passes, you can actually see the body drain. Even with that, he is still trying his best to crack the jokes and poke fun at the nurses. But that is my Michael.

Sending thoughts and prayers out to each of you!!

Cycle 7, Day 2 ~

Just a short update today. Things have been pretty uneventful since his last update. Michael continues to crack jokes and poke fun at the doctors and nurses even though you can see the fatigue already setting in.

Michael had a fairly good night last night. No real nausea yesterday which is a great thing. He did begin with a headache last night, but got his Fioricet and he was able to keep the headache controlled. He did have difficulty sleeping again.

Today has been pretty the same as yesterday. He had minimal nausea and side effects. The nurses kept him on the same schedule for his chemotherapy, so he began his pre-hydration and pre-meds around 11:00 this morning. All he has left is his last Mesna dose at 11:00 tonight and then we will have day 2 out of the way. That’s 2 of 4 days down. The doctors are going to try 4 days this round.

Please keep all those suffering from this dreaded disease in your prayers as we will continue to pray for each of you. Will update again soon!!

And Here We Go Again ~ Chemo Cycle 7

Sorry for not updating lately… We have been having trouble with our internet service at home. We went from Monday until yesterday afternoon with on internet. Boy that was no fun, what to do when you can’t get online? That means we actually have to talk to each other. Lol

Over the weekend, Michael’s head starting getting real tender and he began to lose his hair again. So yes Ms. Tina, we did try a few more hairstyles Sunday before settling with his current look. I will post pictures once we get back home. We did the lovely lime green Mohawk, but then we just shaved it clean. Now I have my beautiful bald man again.

Monday we did hear back from his oncologist about the brain MRI he had last week. The scans are clean!!! That makes us happy. At this point all scans are staying clean!!! These are the best words to hear!!

He is still having the headaches on and off, but the headache medicine they did prescribe for him is helping as long as we catch them early. Michael spent most of the week working out in the shop trying to stay busy. He would come in each evening just worn out and in pain. He keeps going, but once he comes in and stops, he feels it in his back, legs, and feet.

We went to see his oncologist this morning. He wanted to check his labs in the office before he admitted him to ensure they were good. His white blood count was 3.1K and his platelets are up to 135. So we went across campus and checked in the Jackson Building this morning. They actually were able to begin his pre-hydration early around 11:00 this morning. At this point he has already had all his pre-meds, his Etoposide, and just began his Ifosfamide. This means that he should be finished by midnight with everything. That will be nice change.

If I don’t get a chance to update later this evening, I will in the morning. Please continue to keep all these beautiful fighters in your prayers. We are keeping each of you in our daily thoughts and prayers.

Happy Father’s Day ~

Happy Father’s Day to all you wonderful dads out there!!!

I want to say Happy Father’s Day to 2 special dads in my life. First is my dad. Dad, you go above and beyond to take care of all your kids even through we are grown. You are there to help us when we need it and you prove to each of us there is no limit of what you can do and no matter what obstacles are in the way, you can always do whatever you put your mind to.

And then there is my lovely husband Michael. Michael, you too show each of us that no obstacle will stop you. You are here fighting one of the hardest battles of your life with this cancer; yet, you keep going a little more each day. You are always full of life and laughter, even when you feel bad. You have your good days and your bad days, but no matter what you keep on trying. You never will give up and I look up to that in you.

Please continue to keep all those beautiful people fighting this disease in your prayers and let’s say an extra prayer today for all the daddies of those fighting this disease because without the daddies, we won’t have these precious people in our lives.

MRI & Lab Work ~

Michael has been experiencing pains in his back, hips and legs most of the last week. He is still having the headaches. He has been having a hard time getting any sleep except yesterday. He was able to sleep most of the day. His doctors ordered brain MRI. We went in this morning for that and are still waiting on the results. Praying for clean scans!!

We also went in for his labs today. Yeah, his white blood count is up to 4.6K. This is the highest it has been since January. Let’s just hope it stays up there next week so he can begin his next round of chemo. We will have another appointment and lab work next Thursday. If his counts are good then, he will be admitted for his 6-day inpatient stay.

Please continue to pray for all these beautiful people fighting this dreaded disease. We will continue to keep each of you in our thoughts and prayers.

Doctor’s Visit ~

Since we brought Michael home earlier this week, he has been pretty fatigued. He is still having his headaches. He’s having difficulty sleeping and is very unsteady on his feet. He’s been having a few other side effects the doctors are watching closely. I took Michael to his weekly doctor’s appointment yesterday and to have his labs done. His white counts are extremely low at this point and he is neutropenic. His platelets are 75 right now. They have put Michael on precautionary antibiotics for a week and well as give him a headache medicine. Next Thursday they have scheduled a brain MRI, we will see his doctor and have his labs again. We are going one day at a time and hoping he starts to feel better soon.

Please continue to pray for all those beautiful people fighting this dreaded disease as we are keeping each of you in our thoughts and prayers.

Michael’s Home ~

We weren’t able to get Michael’s Nuelasta shot until 4:00 pm today. Once he did get that, I was able to bring him home. He received an Ativan before he left to help with the nausea on the ride home. Hey Jessica, I make sure we don’t need a pink tub on the way home. Learned the very first trip home how to keep his nausea down as we have 1 to 1 ½ hour trip home each time. But as he would tell you, he gets nausea all the time I drive. Men… lol We did get him home around 5:00 this evening.

Once we got home, I got Michael to rest some more. We will keep a close eye on Michael’s counts this week as the doctor is worried he may have to have a transfusion later in the week.

Please keep all those fighting cancer in your prayers. Also, a special prayer goes out to our son. Just know we do love you.

Day 3 ~

Just sitting here watching Michael sleep. You can see where the fatigue from the meds is setting in and he is having more difficulty sleeping.

We did talk with the on-call doctor, no real changes in what is planned. Michael would receive day 3’s treatment, and get released sometime today. Yesterday’s treatment went about the same. Still took the 12 hours to go through the treatment. He still had nausea during treatment, but we were able to keep it controlled.

We are just waiting to see the doctor this morning to see if they can move his Nuelasta shot up some so we can go home. Once we get the word that I can take him home, I will update again.

Today is National Cancer Survivors Day. And to all you Survivors, celebrate today to your fullest as each of you deserve it. Each of you are truly amazing fighters!!

Please continue to pray for everyone that is effected with cancer.

Day 2 ~

With his treatments starting so late in the day this round, I will be a day behind on updating.

We did speak with the doctor yesterday morning. He is mainly concerned with Michael’s counts. His WBC is at 2.4, platelets are still at 87, and his hemoglobin is at 12. These cycles are to run for 5 days of treatment and the 6th day to get his Nueslasta shot and go home. With Michael’s counts, the doctor has decided to cut this cycle to 3 days of meds, 4th day shot and go home which means I should be able to take him home Sunday. The doctor has ordered migraine medicine for his headaches. We will see if that helps.

The doctor just loved Michael’s hair. He had to come back into the room and take a picture of it to take back to the office. As we go for his walks, he gets all kinds of stares are some just laughing out loud.

Around 3:30 in the afternoon yesterday, they started him on his pre-meds. He began his chemo around 4:10 and wasn’t finished until around 3:30 this morning. On the first night, Michael did have some nausea, and was barely able to keep it controlled. Last night, he did have some nausea, but nothing like the first night. He is starting to feel the fatigue.

Please continue to pray for everyone who is suffering from this dreaded disease and other cancers. We will try to update again tomorrow.

Extremely Busy 2 Weeks ~

We have had such a busy time the past few weeks. First, let me apologize to everyone. I am so far behind reading everyone’s care pages / caringbridge sites; I hope everyone is doing ok. Michael and I have been praying for everyone even though we haven’t had the time to read and post.

Michael has been working every hard on trying to get things done before coming in for chemo. We’ve had family in from out of town for the kids’ graduation. We had a great time with the family. It made for a nice few weeks. We spent some time at the lake. Michael had a chance to go fishing. It has been a long time since he’s been fishing. He also had a great visit with his mom. Just wish she could have stayed longer. It was nice to have her here with Michael.

I also had my brother come in from out of town. I was glad he was able to make it down with his family. We did get to meet his girlfriend’s 16 year old daughter. She is 2 years cancer free. She was diagnosed with Burkitt's Lymphoma. She and Michael hit it off from the beginning. You could see that connection. I think it was great for Michael to communicate with someone who had to go through what he has too. Plus she is just a great kid. Still can’t wait to meet the girlfriend and her other two kids. If any one is in Kansas City are this weekend, please stop by the Hyvee in Mission, Kansas, located on Martway. They have their own Alex’s Lemonade Stand on June 5th and 6th.

On Monday, June 1st, Michael and I got to watch both our children walk across the stage and receive their diploma. We are extremely proud of both our son and daughter. Yes, mom did cry. I think I cried for several times. Our son took off this morning for his freshmen orientation already down at Stephen F. Austin University. They just grow up so fast.

Michael decided that since he is going to lose his hair again to chemo, he wanted to dye his hair lime green. So, the night before graduation, Michael bleached out his hair and then dyed it lime green. Yes, doesn’t he look lovely? He sure gets all the heads to turn.

To check out more photos of the kids and Michael go to Michael's carepages website at http://www.carepages.com/carepages/HOPESforMichael.

This morning, we meet his PA at the Jackson Building and Michael was admitted to begin his 5-day chemo treatments again, green hair and all. The nurses just loved it. They did a chest X-ray before accessing his port to make sure it was still ok. Last week, he was taking care of our pig and was leaning against the fence and it slid forward against his port, causing it to move some. He also has been having headaches since he bumped his port. His port does look good and in place. He finally had his port accessed and his pre-meds started around 4:00 this afternoon. His counts don’t look that great. His WBC is at 2.3 and his platelets are at 87. They did go ahead and begin his chemo. This is the first time he will be receiving the Etoposide. Right now he is receiving his Ifosfamide. He did receive that one before. So far he is doing ok with the treatment. He does have some nausea, but he is able to control it for now. He still has 2 more doses of Mesna tonight and still has his post-hydration to get.

His doctor did call us around 5:30 this evening. He is very concerned with his blood counts and the headaches. He said he will be in first thing in the morning so we can come up with a game plan. He did mention the possibility of doing a brain MRI again for the headaches and possibly doing another bone marrow test to see if they can figure out why his counts are staying low. Michael does NOT want to do that one unless they can knock him out. The first time he had one of those, he said he could not stand the pain and he said he will tell the doctor no.

Ever since his last chemo back in January, his counts haven’t climbed back up to where the doctor would like them to be. They have been staying around 2.5K. Hopefully we will have better answers in the morning.

Michael and I are working on coming up with some fundraising ideas. As soon as we get somewhere with those ideas, we will let everyone know.

We ask everyone to continue to pray for everyone suffering from this dreaded disease and other cancers.

SCANS~

Just a quick update for everyone. I will try to update more later on.

Michael had all his scans on Friday May 15th. He had CT scans, MRI’s, and the also did a lumbar puncture for the spinal tap. He was down for a few days with the spinal tap.

We finally did talk with his doctor late Wednesday evening. The spot (or shadowing) where the tumor was is still showing on the MRI. It has not changed any from the previous MRI. They did the spinal tap and tested his fluid. IT IS CLEAR OF DISEASE!! They are saying with the surgery and radiation that the spot may stay. So at this point he is still clear. We are very happy to hear this.

So we will proceed as discussed at the first of the month. He will go in for his “in-patient” chemo on June 4th for 5 day and repeat every 3 weeks. We are not sure how many treatments he will have at this point; it will all depend on how well his body can manage the chemo this time.

Please continue to keep those fighting this dreaded disease and their families in your prayers.

HAPPY MOTHERS DAY!!~

First, I want to say Happy Mothers Day to my mom. Mom, you are always there for all of us (me and my family, and my brothers and their families). But most of all, I can never thank you enough for all you have done for Michael and I these last 9 months. Anything we ask, you have done and then some. You have truly made it easier in dealing with all Michael and I have to go through. Mom, you are the BEST!!

Second, I want to say Happy Mothers Day to my mother-in-law. Even through you are many miles away, we thankful for everything you have done for us too. We can NOT wait until the end of the month. We are so excited to have you come down to stay with us for a few weeks. Michael is making big plans for ya.

Next, I want to say Happy Mothers Day to all you amazing women out there. Each and everyone one of us have a different story to tell about our children. And each child moles us differently to be the mothers we are. Each mother is special, but I have met some truly amazing mothers out there through carepages / caringbridge. Each of your stories not only tell a story, it helps those going through the same thing, but it also shows that each mother has no limits to care for her child. It shows that unconditional bond we have for our kids and nothing (not even cancer) can stand in the way for you to care for them. Even though I don’t know most of you that follow Michael, I am blessed to have the ability to follow your stories. You all give us HOPES to over-power this dread disease.

Just a quick update on Michael, we are waiting for the doctor’s office to set up all those scans. They are going to do multiple MRI’s, CT scans, chest X-ray, spinal tap, and a few more. If the scans come back good, Michael can wait until after our kids’ graduation to start chemo again. If they do find anything, they will put him in soon to begin. Michael wants to wait so he can spend time with his family when they come in to visit and so he knows he is be fine to go to graduation. His family will be here for two weeks and he doesn’t want to be in his fatigue stage while they are here. He is also worried about his counts if we start before they graduate.

I hope each mom out there has the best day of their lives today. Again, Happy Mothers Day to all you moms!!

Dr. Appointment and his Next Steps ~

Michael and I went to his doctor’s appointment on Friday. His counts are ok; his white count is at 2.4K. While we were at his appointment, we did not get to see his PA this time. I think this is the first time we’ve missed her. We asked Michael’s nurse where she was. She was over at the Jackson building admitting another patient and that she was going to be sad that she missed Michael because she tells everyone that Michael is her baby. He is like that, has all the women calling him their baby…

After having a good discussion with his oncologist, our next step now will be more chemotherapy. These rounds will also be inpatient. The doctor did say there are a few other options but due to the amount of travel time we would have going back and forth, he would feel better with impatient chemotherapy. These rounds will only have 2 chemotherapy medications instead of 3. He will still get the ifosfamide, but will now begin receiving etoposide. He will continue with all of the preventative meds as well. His oncologist wants to start pretty soon. He said he will do all the “staging” the first day he admits him and then begin the chemo that evening. This will allow us to have all the scans.

He told us to go home and work out a schedule. We have some pretty big dates coming up that we want to make sure Michael is at the high points. Both our beautiful children will be gradating high school June 1st, which means we will have a few weeks of family and friends coming in from out of town. We also need to work around our son’s freshman college orientation in June.

Michael’s feelings on all this, he is done. He doesn’t want to do any more right now. Radiation really didn’t have many side effects on him. He has had 2 “good” weeks, well better weeks, even though he has been having pain in his legs and back, he has been able to enjoy being out in the shop around cars. His hair has started to grow back. He just wants to go back to a normal life. He wants to work on cars again, he wants to be able to do things he could do a year ago. Over the last 8 months, so much has changed and as he says “I am done”. When he says this, I just give him time and then we will discuss our next step that we will fight together. If you know Michael, he is a fighter, but he also does not like being down for any amount of time. He always has to be up and going.

The doctors concern is that Michael’s counts have not climbed up where he would really like them. We will have to closely monitor his counts. His other concern is he is not sure how long his body will be able to take the chemotherapy. Our goal the first time was 6 treatments, but he stopped him at 5.

Michael and I still have a lot of discussing to do. We will update you when he has made his decisions.

YEAH ~ DONE WITH RADIATION!!!

On Monday, Michael received his last dose of radiation. He didn’t feel that great after treatment. He said this treatment took a little longer than all the rest. He would have finished up last week, but he “skipped” his treatment on Thursday last week. Instead, on Thursday we took our son down to Nacogdoches, Texas (about a 3 hour drive) to check out Stephen F. Austin State University. We got a chance to check out the campus and to meet with his financial aid officer. Our son received his acceptance letter back in January and will be attending this fall. It is a beautiful campus located in East Texas. I guess this really means that youngest is finally growing up. The trip was a little much for Michael to handle. He was extremely tired by the time we got back home.

We had a lovely weekend. The kids helped their younger cousins (ages 4, 2, and 2) color eggs on Friday with grandma. Not sure who had more fun, the smaller kids or my kids. We woke up Sunday morning and attended Easter Service. Our son and his high school jazz band director played instrumental for the church choir. His director played his Trombone while he played his Trumpet for one hymn and then he played his French horn for another hymn. Between the choir singing and the two playing the horns, they all sounded amazing. I always love to watch and listen to him play any of his instruments. Then we came home and the kids hid eggs for the younger ones to have their Easter egg hunt. Again, I think the big kids had more fun.

Michael will have about 2 weeks to rest before we get to go back and see his oncologist. Hopefully we will have a “game” plan of what will happen next. Michael is getting stronger each day. He still has fatigue set in at times, but he knows when to stop and rest.

Please continue to pray for everyone. There are many others needing our continued prayers in their journey fighting cancer.

Radiation Week 4

Michael has not had a very good week. His headaches have returned. He has also been having abdominal pain. They did say this may happen due to the location on his back when they adjusted his dosage this week. Next week they will be doing more adjustments and increasing his dosage even more. At least he will have the weekend off. Hopefully he will feel a little better tomorrow so we can enjoy the beautiful day. It’s supposed to be in the 80’s tomorrow here in Dallas.

We went to see his oncologist on Thursday. We had a nice long talk with him. We went over everything from beginning until now, his treatment plan, his surgeries, his appointments with his other doctors and what they had said, even his job status and if he will be able to return to work.

On his treatment, Michael was able to do 5 of the 6 chemo cycles they wanted to do in the beginning and he is currently doing his radiation. The next step would be to do possible chemo again. With Michael’s cancer, he is a little on the “rare” side. Ewings Sarcoma is generally a bone cancer. Michael’s was inside the spinal fluid entangled in his nerves. None of our doctors and those they have been discussing his case with has seen anything like this. Right now, they are trying to base his treatment plan as if it was located in a bone and if he was younger. Yeah he is older than the “norm” to have Ewings, but I have always said he is a kid at heart, and I can now say in the spine too.

The doctor wants us to finish up his radiation; right now he has 6 doses left, rest for a week or two, and then we will meet back with him on the 24th. Before that, he will have meetings with all of the other doctors (his radiation oncologist, neurosurgeon, etc), as well as meeting with the doctors down at MD Anderson. Both Michael’s oncologist and his radiation oncologist have been discussing his case with some doctors down there all along. They are the ones that created Michael’s treatment plan.

At this point we are not sure if the radiation oncologist will have any more scans scheduled after we finish radiation. Michael’s oncologist did say he may end up sending us down to Houston to speak with the doctors down there before we decide what to do. This will be one of the items we will discuss on his next visit.

As for work, the doctors still have Michael off work until May 1st. This time was to allow chemo, radiation, a few weeks to recover from radiation, and depending on what we decide on our next appointment. If they decide no more chemo and if they feel he will be able to the work, and then they may let him go back on May 1st. That was the plan when we left the doctor’s office yesterday.

Michael’s employer does have in their medical leave policy that after 6 months of being on medical leave, they could possibly terminate your employment. Michael has been off work since August 20th (which is right at 7 ½ months right now) when his problems in his back and legs got real bad and he needed to use a cane to get around. Since the first of March, he has been talking back and forth with his corporate office on trying to extend his time. They called him today and have decided to terminate his employment. They said that they have allowed him enough time and can no longer keep him employed. They did say that they do have a “6-month” re-hire policy that will allow him to keep his status if a position is open at that time.

We will just have to play it by ear on his job. I just keep telling him all I worry about and want is for my husband to fight this and to become healthy again. I know we will overcome this as any other obstacle we have come across in our lifetime. I just want to make sure that he takes his time and we take every step to make sure we do over-power this dreaded disease.

We do want to thank everyone for their kind messages, prayers, and support. That does bring us “HOPES”. For those of you that don’t know the meaning of “HOPES” in “HOPES for Michael”, it stands for “Helping Over Power Ewings Sarcoma”. We also want to say thank you for visiting Michael’s page. Please continue to keep Michael and all those in our Ewings family in your prayers.
Melodie

Week 3 of Radiation Down – Just a quick update

Michael has completed week 3 of radiation and only has 2 weeks left. He met with his radiation doctor today. Tomorrow he will have a few “adjustments” on his markings. They are going to intensify the radiation on a more concentrated area. They will do the same again next week. He is still getting headaches on and off and he is still getting the pain in his back and legs. They don’t think the headaches are related with his radiation.

Michael has an appointment with his oncologist on Thursday. We are hoping to find out what his next step will be once we finish his radiation.

Latest Update on Michael~

Sorry for not updating any sooner. We’ve had a busy spring break, spending time outside enjoying the lovely spring weather here in Texas. Michael has made it through his second week of radiation. He is still having a few headaches. He has started having back pain and leg pain again. He is also having trouble sleeping at night again. Not real sure why he is feeling these now. He will be meeting with his doctor tomorrow. His hair has grown in a little more. It is still very short.

We want to send a special “thank you” to Andrea Grace (http://www.carepages.com/carepages/supportnick) for adding Michael to the list of Sarcoma Friends. Please be sure to check out the list and keep each of these wonderful people and their families in your prayers.

We will try to send more of an update later.

Michael’s First Week of Radiation and More Doctors Appointments

Michael made it through his first week of Radiation. He has been getting a headache each day about an hour or so after his treatment. His radiation oncologist has ordered a brain MRI to be on the safe side. He is getting tired still. Other than that, he has no real side effects from the radiation. Michael’s hair is slowing starting to grow back.

Friday we had a day full of appointments again. This morning we had his 2 week follow up for his gallbladder surgery with the general surgeon. She said everything looked good and we would not have to come back to see her unless he had any other problems, so that was a good report.

We also had an appointment with his neurosurgeon. Nothing but good reports from him. He said he was amazed at how well Michael is doing. Michael still has his nerve lose in the back of his legs and in his small toes. That is tolerable. The main thing is he is walking and able to do just about anything. That is all that counts.

After that, we went imaging center to have his MRI of the brain. The doctors would rather be safe than sorry with the headaches Michael is having. His radiation oncologist called us later in the evening and said the films look good. We will continue to track his headaches and see if we can figure out what is causing them.

We want to thank everyone for their continued help and support. And thank you for all your continued prayers.

First Dose of Radiation

Michael had his first dose of radiation on Monday. He had to go a little early so they could make sure they have his "markings" correct. They added a lot more to his back. It looks like a little kid took a marker and drew all over his back. After they touched up his marks, he went in for his first dose of radiation. He said it took a whole 2 minutes and he was done. He is going to love driving 2 hours every day for a 2 minute procedure.

He seemed to do pretty well with this dose. We didn’t notice any real side effects yet. He will go back this afternoon for his second dose. So he has 1 down and 24 more to go. He will meet with the radiation oncologist every Tuesday to go over his radiation plan and to check on his progress.

He is still working on building up his strength everyday. He still gets winded easily. His hair is slowly starting to grow back. We will go back to see both the neurosurgeon and his general surgeon for follow up appointments this Friday. We are not scheduled to go back to his oncologist until April 2nd.

I will update everyone later in the week on his progress of his radiation. Thank you for your continued prayers.

Appointments, Appointments, and More Appointments ~

Monday, we had 2 dr. appointments and lab work as well. His blood counts look OK. His white count is currently at 3.3K and his platelet count is at 137. The liver counts which they were concerned with on Friday are looking much better. We also were able to get his MRI’s rescheduled for yesterday. He had 3 MRI’s done yesterday afternoon. It made for 3 long hours at the imaging center. Let’s just say we didn’t get home until very late yesterday.

Today, we went back to the Radiation Center. Michael had his CT scan to do is radiation work-up. This consisted of them using the CT scan machine without the dye contrast to help them see where they are going to do the radiation. They put marks on his back that will need to stay there throughout his radiation treatments. They also were able to get the “calibration settings” from the machine. Between the markings, calibrations, and photo imaging, they will know exactly where they will do the radiation.

Right now, it doesn’t look like his next appointment with anyone will be next week. I know he is happy about that. He is so tired of doctors, driving back and forth to Dallas; he is ready for a “small break” to stay home for a bit.

He will begin is radiation treatments on Monday, March 9th. He will go Monday through Friday, every day for 5 weeks. On Monday, the treatment will be a little longer just to double check, re-check, etc the markings and calibrations before they begin. Then on Friday we will meet back with his general surgeon that did is surgery last week and we also have his 6 month check-up with the neurosurgeon. Wow, it’s been 6 months since they took out the tumor.

What a journey it has been this past 6 months. He was at the point he was not walking and we found out he had a tumor. We had the tumor removed and then he is walking, amazing everyone. Then comes that big “C” word and find out he is going to have very extensive treatments. I don’t think either of us thought it would be like it has been. And we still have another 6 months ahead of us. We will have to see what the next 6 months bring. Please continue to pray for Michael.

Michael’s Weekend ~

This weekend, Michael did OK. He still wanted to help as much as he could to finish off the move. It was hard for all of us to make sure he didn’t. As he said in his own word “He can’t stand not helping and not doing anything”. We were able to get everything finished this weekend.

His right shoulder was still bothering him through the weekend. He was not able to use his right arm at all over the weekend. He is finally able to use it about 50% today. The only real pain besides the shoulder is the actual surgical sites. He has 4 small incisions on his stomach. The hardest part besides keeping him from helping move was trying not to make him laugh. Those of you that know Michael knows he loves to crack jokes at anyone.

What an Exciting Week ~ NOT

And it has been a week. Sorry if this one goes for a bit, but we have been busy and not stopping (well until the other night).

We spent most of every waking moment from Thursday through Sunday trying to get everything moved. We did get everything moved out of the house and still had a few thinks left outside to move (his cars, the pig, the storage unit, tractors, etc.) But that was ok as Michael and my dad could work on that during the week and get it all done by this coming weekend. And let me tell you, I think everyone was worn out by Saturday night, but we kept on going. Even though Michael is now 5 weeks out from his last chemo treatment, he still gets very tired so easy.

We did hear back from all the doctors by Monday and had gotten all his appointments scheduled for this week. So Michael’s week was supposed to go like this. Wednesday he was scheduled to have tests with his Gastroenterologist. Thursday he was to meet with his Radiation Oncologist and go to the imaging center to have a chest x-ray done and to get one of his MRI done. Friday he was to go get his last 2 MRI’s done at the imaging center. Plus continue to get the “outside” things moved. We did get one thing done on his list. Well maybe 2 but not in the right order as planned.

We went to his testing on Wednesday as planned. Everything looked good. Later in the day, Michael started to experience the same pain that has been coming and going. This pain would begin at the right of his back, and then go around to the side and then into the abdomen. He would generally double over with this and it would last around 2 – 3 hours then go away. At first, he would have it every few weeks, sometime in the middle of his chemotherapy cycles. Everyone thought it was something possibly in his intestines, stomach, etc. That was the whole reason for seeing the Gastroenterologist. We could never put our finger on why he was having these pains or even a pattern to them.

The pain on Wednesday began last afternoon, and kept getting a little stronger through the evening. We sat down around 7pm to eat dinner. He was able to eat his dinner and keep it down, but the pain was still there. By the time we were going to bed, he had finally asked for some pain medicine. He was not able to sleep, still doubling over, asked for another does since it was not working. Finally around 1:30 in the morning, he called his Gastroenterologist. He could not take the pain any longer. She suggested we meet her at the ER. We got up and took our hour drive to the hospital).

We check in, wait an hour in the waiting room, and finally get to go back to an exam room around 4:15 am. His doctor ordered a CT scan. After answering a ton of questions, the nurse accessing his port, drinking that lovely (nasty) stuff you have to drink for a CT scan, he was able to get it done around 7am. They said it would take about an hour to read the scans and get the results back to the doctors. Around 9am, his oncologist came into the ER room and told us the results. Michael had an inflamed gallbladder and a 1.3 cm gallstone blocking. They called a general surgeon in. She suggested they remove the gallbladder laproscopically. She said she could get him in that afternoon.

By 10:30 am, they took him down to pre-op. The doctors felt he would be more comfortable waiting there than waiting in the ER (he had a real loud patient yelling all the time in the room next to him). The doctors said it would only take about 1 – 1 ½ hours. By 1:00 they took him off to surgery. By 2:20, the doctor came and found me in the waiting room (and had to wake me up, I finally got a little sleep). She said that everything went well, and they were able to remove his gallbladder laproscopically. She was suggesting we stay at the hospital at least one night for observations but it was going to be up to his oncologist.

They kept Michael in recovery for quiet a long time. They were waiting on getting him a bed on the surgical floor. Finally around 5:00, they had a room for him and we were able to get him up there. For about the first hour or two, he was really out of it. He was experiencing some pain. He had a lot of discomfort throughout the night. He did feel better this morning, ready to go home. As he said, we were not getting the care that we normally get when we go to the Jackson building. He was in the main building this time and they are a lot busier there. We weren’t getting that “personal” touch we get when he goes into the oncology ward.

With all this excitement, we had to cancel his Thursday appointment with his radiation oncologist and all his x-ray, MRI’s. At the time he was supposed to get these done, we were in pre-op. We were able to get his appointment with his radiation oncologist rescheduled for Friday.

His appointment was supposed to be at 2pm, but once again, we were still at the hospital. Finally they discharged him around 4pm. We drove over to meet with the radiation doctor. He explained what to expect when he starts radiation. He did say that he wants to get the MRI’s done that the oncologist ordered before we begin his work-up for his radiation. This will give us a clear picture to make sure there isn’t anymore tumors’ floating around in his spinal cord.

I finally got him home around 6:30 this evening. I was able to get him settled in and fix him something to eat. He was able to keep the food down so that is a good sign. He finally asked for some pain medication before he decided to go to bed. Now he is sleeping well. I hope he is able to sleep through the night.

As for the “moving” of the things left, I will work on getting everything done tomorrow. The hardest part is going to keep Michael out of the way and in the house. It is going to take everything we all have to keep reminding him we will get his things moved and do it the “right” way.

So now on Monday, we will go back to see his oncologists’ and get is blood work done. They want to re-check his blood counts and check on his “liver” counts also. Also on Monday we will call and re-schedule his chest x-ray and MRI’s. Once we get his MRI’s done and the results to all his oncologists, we will schedule is radiation work-up. He will go back and see the general surgeon in 2 weeks.

It keeps going and going…
Anyways, thanks for all the prayers and please keep them coming.