We Need A Miracle

We need a miracle. J had his brain scan this morning and things aren't looking good. His brain is continuing to swell and they've have given him meds to relieve the swelling. We are doing a fast for him for the next 24 hrs. They will do another brain scan in the morning. They say things don't look good and he may not make the night. We need a miracle. I know that we will be together again someday and no matter how tough things get I will always have that peace. Before J went into the hospital just 2 weeks ago he blessed me with peace and comfort and that's all I've felt. I feel at peace despite my world crashing down around me. I know that no matter what happens my kids and I will be at peace and be ok. J will always take of us even if it isn't beside us. Please keep him in your prayers. Thank you to everyone who has touch our lives even in a small way. We love you all.

A Small Update:

I don't have much to update on J tonight other than they put him under deeper sedation last night because he was still having seizures. He is still on the breathing machine and they started bringing his temperature back up around 2pm today slowly about a 1/2 a degree to a degree at a time. They still have to watch him closely as this causes other issues to arise such as his blood pressure dropping so they started him on meds before they started raising his temperature. Tomorrow morning they will turn off the sedation and see if he comes to at all or if there are anymore seizures. If he is still having seizures they will most likely put him back under. There are no guarantees that he will wake up tomorrow. We hope and pray that he'll show some sign that things are there and working... it could take up to a week for him to wake up. The good thing about him sleeping right now is that this is the most painful time with horrible mouth sores and him feeling so sick. (this is why they believe that he aspirated yesterday: he got sick and threw up and swallowed some of it back and choked until he was no longer breathing.) At least he can sleep in peace for now. I will update as more info comes about and they will possibly be doing a brain wave scan if he doesn't wake up or show any kind of sign. As for the kids C doesn't really seem to know any different than that J is in the hospital still and sick. K woke up a few times last night and was crying and one point whimpering and she's never done that before. I'm pretty sure she could tell that something is wrong. As for me I'm doing pretty good. Hanging in there. I think night time is when it hits me the most. I miss talking to J and telling him goodnight; I love you. Hearing him tell me that he loves me back or me just being able to text him goodnight, I love you. I think we often take for granted something as simple as that. So please don't... if you love someone tell them everyday. I can at least know that the last thing he heard me say on Tues. when I left his room was I love you... he couldn't talk but he could write on his white board that he had and he made a point of telling that me that he loved me everytime and that I was beautiful... that I'm grateful for. Thank you for everyone's out pouring of support and prayers.... please keep them up. We love and appreciate everyone.... Its amazing to me all the love we've felt even from people we don't even know... so thank you.

Please Pray Hard

J is currently on a breathing machine... earlier this morning he was joking with the nurse and when she came back 20-25 min later to take his blood sugar they found him non responsive with no heart beat and not breathing. The Dr. started compressions on him and started his heart back up. They have moved him to the ICU unit on the oncology ward floor. They say he won't wake up from 24 hrs to a week. It is a wait and pray game right now. We won't know what kind of long lasting effects he will have for a while. They are doing a test to check his brain waves and see what the small seizures he is having are doing. They are also cooling his body down to 95° for 18 hrs. to prevent brain swelling and preserve his other organs. Then they will let his body temp go back up on its own. This will happen about 1pm tomorrow. We just have to wait and see how his other organs come out of this as well. We won't too much more till they do another brain scan Friday morning. The first one showed signs of activity but was diminished and could have been from the trauma. They did an ultrasound of his heart and it is strong. Please keep J in your prayers...pray hard that he will recover with no problems, no lasting side effects. We need him...

Day 0: Happy Birthday!

Well, J got the rest of his 37.5% of stem cells today... 3 bags vs. the 1 bag on Sat. He was drowsy from the pre-meds and wasn't feeling so great this morning. He has some really bad mouth sores and now is finding it hard to talk and swallow which means he'll be on IV nutrition soon. This happens to everyone. Its to be expected. He has requested a white board so he can comunicate with people and has now had to just text instead of talking on the phone. The Drs. have said this will be the worst week. But the good news is that he did well with his stem cell injections and that as fast as he has felt bad he will feel good just as fast. Thank you for all the prayers. Please bless J that his stem cells will continue to rapidly reproduce and that the mouth sores will subside. Its hard to believe that we are down to day 0 from now on they keep track of his days by adding a + to each day so tomorrow is day +1 and they go from there. Getting to the plus state means things will only get better. Also please say a special prayer for K and especially C who is having a hard time dealing with his dad being in the hospital. Needless to say he got in trouble at school for the first time today... Thank you for all the love, support and prayers! Keep them coming.

12.5% of Stem Cells...Its a Good Day!

Well J made sure that I knew what time he was getting his stem cells back so I was able to be there and talk with him before they doped him up. They came in and gave him his pre meds and his Benadryl but he stayed awake for the whole process which was only a few min. The doctor came in and talked with J and J was joking around with him. He even asked one of the nurses at one point if he was going to get stem cells like Arnold Schwarzenegger and get all strong and have muscles. He was hilarious when he became doped up. He would slur his words together and even wanted to call his family and said "it'll be so funny" I was laughing so hard while he was leaving a message on the machine. I tried to get a video of him but by the time I did he wasn't saying much. He did however have me video him talking once he was doped. I can still smell the stem cells which to me smelled like a strong tomato soup other people have said it smells like creamed corn or garlic. Either way I couldn't stand the smell. J just said it was cold and he could feel them going back into his body. His doctor said it's nothing exciting but I thought it was pretty exciting that they can do stuff like this and that means one week down. The only side effects from the stem cells being transfered back was that he got the chills. They'll give him neupogen again to stimulate the stem cells to reproduce and will watch for when his counts come back up again which will be such a happy day.

This first video is of J before he got the drugs.


Once he got the drugs and they kicked in his words were slurred and he was just happy and feeling good.


And this last video is of the last little bit of his stem cells being put back.

Friday Family Date Night

Just wanted to update everyone on J. He is doing so much better tonight and even was able to eat dinner and keep it down. The meds they gave him have really been working. He gets to have a partial "birthday"(this is what the nurses call it) tomorrow; when he gets 12.5% of his stem cells back. He'll get the other 37.5% back on Monday which will be his official birthday. I'm hoping to be able to be there and get some photos that J wants. They'll be giving him steroids, Benadryl and some other pre-meds that will probably knock him out and he won't even be awake to see himself getting his cells back. He was feeling well enough tonight that he called me and the kids and I got to have some web cam together. Most of it consists of him sending little "winks" that play different images onto the screen. The kids love it and towards the end K finally realized that her dad was on the screen too! After a good 15 min of talking and sending winks back and forth it was time for J to tell the kids goodnight and K blew her kisses and was off. C ran back and forth telling J goodnight. C told me that he wants his dad to come home fast so pray that the stem cells will engraft (basically reproduce) quickly...

Chemo is all done!

All my chemo is done! Tomorrow is a rest day then they start giving me my stem cells on Saturday. I slept all afternoon from the drugs but am feeling better now. Well, that's all I've got for now.

J

Half Alive

J is not quite feeling it. It seems to have hit him harder and faster than he thought. He can't seem to keep any food down and because of the way he is getting sick they want him to stay on nausea meds. He could possibly tear his esophagus or burst a capillary in his eyes so they are closely watching him. He's been on a number of different meds and nothing seems to be calming the nausea. As I was there this afternoon the nurse came in and said they were going to give him another med that seems to have good results and seems to help out a lot of people. Hopefully this will work otherwise he is constantly doped up Adivant and sleeps all the time and I know he doesn't like being that way. Time seems to go by so slow. It seems like he's been gone for 10 days not 4. J said to me that this had better work (the chemo treatment) or he was going to be really mad. I'm sure at time he feels like he's half alive and this isn't the worst part yet. Next week is supposed to be when his counts will drop and he'll probably be on IV nutrition. But there is a line from a song I was listening to on my way to see J ..."Believe me when I say it's hard. We'll get through this tonight And I know one day you and I will be free..." The combo of being away from the kids and me and being sick is wearing on him. He's disappointed in missing out on the things the kids are doing but I just remind him that there is always next year. He's gonna be here for that next year and that's what counts. They aren't going to remember that he wasn't here for Halloween or other activities. They'll remember the years to come when he was there and that's what is most important right now. Despite J feeling sick he still has me take his pictures and is smiling in all of them. (he looks like he is sunburned but it is a side effect of the chemo that is excreting from his skin.)He is still a fighter and isn't about to give that up. C and K seem to have their days. Monday was a hard night and as the days go by things get a little easier for somethings. C asked if he could go see his dad at the hospital yesterday and I had to tell him that he was too far away and that maybe they could web cam with him. Luckily, J was up to it and the kids were able to see J. C seemed to be satisfied with that even though its not the same. K seemed to get a kick out of seeing her dad and both kids were happy to see him and blew kisses and told him that they loved him. That seemed to brighten J as well. When I was talking with J and showing him pics of K, I showed him one of her talking on the phone. I remember taking the picture as she squealed with delight. Turned out that she had called J's cell phone but he had missed the call and she had heard his voice. We were able to figure that out by what time the call was that he missed and looking at what time I took the picture. Just the sound of his voice made her a happy girl. C and I made a chain countdown that hangs in J's room. He has me tear one off every day and each ring says different things. I know this is another things that helps keep him going. Knowing that we are at home taking a link off everyday too and waiting for him to be able to come home. Thank you for the love and prayers. Please pray that these new meds will work for J's nausea. He just wants to feel better. I know that it'll take sometime and that its hard but with everyone's prayers we will all make it through these tough times. I just wanted to leave with this view from J's room. Not too shabby...

All settled in

Well, I’m all settled in and getting my pre-meds, chemo starts later today. They have a high end air filter system so I can have visitors and no one has to wear a mask. Just make sure your feeling well. Here are a few things to be aware of if you come, don’t let them scare you off. (E has my room number and directions if you need them)

1. Please call before you come so you don’t waste a trip out if I’m not up to or able to have visitors.
2. They have free Valet parking or a garage and the first 2 hours are free in the garage.
3. When you get here they will ask that you scrub your hands for 3 minuets.
4. If you bring me any food, it has to be pre-packaged and no fast food.

So far things are good, the staff is VERY nice and they offer a lot of things to keep me in good sprits and shape. They have music therapy and a specially trained Oncology massage therapist that will come see me. They have a DVD and video player in the room and a video library. So they work to keep me doing well during my stay.

On another note I had an interesting experience this morning, one my parents will appreciate (I’ll explain why after.) When I got up this morning for some reason the theme song to the movie Rocky start playing in my head! The reason why my parents will appreciate this is that while my mom was pregnant with me the first time she felt me kick was while watching Rocky!

I appreciate all the support and prayers and ask that you keep me as well as my family in your prayers!

J

Test update and Transplant Explanation

1. I had one more test this morning, a PET scan. I received a call this afternoon and they game me the results and my Cancer is more then half gone, it appears that the cancer is only showing up in one Lymph Node! So things are going quite well.

2. For those who want a better explanation of what the Stem Cells are used for I will try to give a brief one:

Here is the process. I will be receiving a VERY STRONG dose of Chemo that will wipe out the Cancer and will wipe out my Immune System in the process. So they will give me my Stem Cells back after the Chemo so they can re-build my Immune System.

I hope this helps.

The Long Road Ahead...

We met with J's doctor yesterday afternoon to get all the test results of his heart, lungs and brain. Everything came back really good. We also got the results of his CT scan which indicated that the cancer has been drastically reduced. Cut in half in fact after 2 rounds of Salvage Chemo. This is where they want him to be. It means his body is responding well to the chemo and is ready to start the Stem Cell Transplant Chemo. J starts this chemo on Monday the 20th at 8am. He'll check into the hospital and start his chemo that day. He has 4 days of chemo a day of rest then he gets some of his stem cells back another day of rest and then they'll give him the rest of his stem cells for that transplant back. They bring the bag(s) of cryogenic frozen stem cells to his bed side and thaw them there. They then hook him up and and transfer the stem cells. This process takes only a matter of minutes and is painless. They said if he nods off he'll miss the whole thing. Its very anticlimactic. That's the pretty easy part if you can call all that easy... The hard part is going to be J's recovery. He will then have 2-3 additional weeks where his body will take the stem cells and start to rebuild his immune system. They said he'll be very sick to the point that his throat will hurt so bad that he'll be on pain meds for that and they'll probably be feeding him through his IV. Once he can drink 2 Ltr. of liquids and keep that down and his whites are up they'll let him come home. The Doctor seems hopeful that he'll be home mid Nov. just before Thanksgiving. He'll have some time to recover from all of this and start his next round anywhere from 2-4 weeks after he comes home. Things seem so long, so far away. J's friend sent me a good quote the other day: "The test of character is not 'hanging in' when you expect light at the end of the tunnel, but performance of duty, and persistence of example when you know no light is coming." We know there is a light its just hard to see at times but J is so willing to fight and although he'll miss my birthday, Halloween and possibly Christmas his doctor said "I don't care about this Christmas, I care about the next Christmas and the next Christmas after that and so on. I want you to be around for the next one." We agree. This is what it is all about. Sure we will miss him and the kids will have a hard time at times (especially not being able to see him and I know how hard this will be on J) but we want him around for the long haul and if that means missing out on one Christmas then so be it. Please pray that J will be able to handle this next round that his won't have such a painful recovery and that he will recover quickly so that he can come home to be with us. Thank you for continuing to think and pray for us daily. We are so blessed.

Quick update.

I'm doing good and have been going to work. We have an appointment on Thursday with the doc to get the test results from all the tests last week. We will then find out what is next and post once we know the schedule. Thanks!!!

From the Bottom of Our Hearts...

Thank you so much to Wayne, Deanna, April, Russ, Lauren, Ella, Micah, Paul, Rachel, Brooke, Devin, Ashley and Megan:
Thank you for showing us so much love and support. C was so excited to open this box of goodies and to see how much you all are thinking about us. Thank you to the Heywoods for the fun Halloween box of goodies. The kids thought it was Christmas. Thank you to everyone who has said countless prayers in our behalf, wore a yellow wristband, thought of us on a daily basis. Babysat, called to see how J was doing and those who have left comments on the blog with words of support and encouragement. Thank you to those who have gone out of their way and visited J and brought him something to pass the time or a way of encouragement. We just want you all to know how much we appreciate every gesture big or small it means alot to us, so thank you from the bottom of our hearts.

Birthday

I had a great birthday yesterday thanks to E and all my family and friends. I have been so involved with treatment that I forgot about my birthday until it was upon me. I was not too concerned with my birthday, but thanks to everyone I enjoyed it! E made me a lemon cake (for those who don’t know I’m a lemon junkie) in the shape of “Master Shake”. For those who don’t know who/what “Master Shake” is, he is from a cartoon show called ATHF. E and I had a nice dinner then my family and E’s family came over for cake and ice cream. It was a good time, thanks to all!

Is Your Pink Showing?

Well is it? This month is Breast Cancer Awareness month but not only that it is also Cancer Awareness month. I am by all means not someone who generally would go out and get pink put in her hair but it is for a good cause. All the money goes to supporting cancer research. And it is only $10 for a pink hair extension. (Tantrum Hair Salon: call and get Pink'd: ask for Amy she's awesome.) You are all probably wonder why I'm talking about getting pink hair on here since that has nothing to do with J's cancer... but that's where you are wrong. It has everything to do with J and you and someone you love or know. Everyday around 3,400 people are diagnosed with cancer. Everyday around 1,500 people die from cancer. A lot of the time we think that cancer isn't gonna hit home with us. That it isn't going to happen to me or to someone I love, not going to happen to my brother, sister, parent, grandparent, best friend. But that isn't true. It effects everyone who is sitting here right now reading this. Whether you barely know J or you've known him forever... It effects us all. I know I'm always guilty of thinking well, I don't have $50 to donate so I'm not going to make any kind of difference in cancer research. But that's where I'm wrong; that's where we are all wrong. Even $5 makes a difference. It pushes us that much closer to finding a cure. The link to the left (click on the picture) for Stand Up 2 Cancer is active. (there are a few ways to donate on their web page. Mobile phone, phone or mail or on the website.) Please donate. It doesn't have to be in anyone's name or even that much. You don't have to donate to SU2C. It can be to any cancer organization. Just do it. Because your donation may help save the life... and it may even be your own some day. I hope and pray that no one ever has to go through what J has endured. What our family has experienced... So please make sure that you donate even if it is only a dollar. You can be the one that makes a difference in someone's life.

6.1 Million and Counting

J was able to collect 6.1 million stem cells yesterday which was more than enough. He was to collect 6 million but since the Dr. thought he was collecting so good they had him come in to collect more again today. So he's hooked up to the machine again which is used for apheresis (similar to dialysis). They want to collect as many as possible just for good measure. This is so great that he was able to produce more than enough for what he needs and means that his body is working hard to get those cells produced. J came home yesterday extremely tired and just worn out. The process makes you really tired and he'll probably be tired for the next couple of days since they are taking blood out of him and extracting the cells and putting it back at a high rate of speed. He also came home with a new bandage that now has to be changed daily. The other bandage gave him a terrible rash. Seems he has sensitive skin and the adhesive on these bandages doesn't mesh well with him. He just has to be more careful around the kids since it is more open. J is such a fighter and even though he's had numerous problems with bandages and having to be hooked up to machine after machine he still has that fighting spirit. The next week or so will bring tests to test his heart, lungs, kidneys and other vital organs to see if they are up to what they are going to be throwing at him during the next chemo. Thanks for the prayers that have shown us so much that they are being heard. We just need to pray that all his vital organs will be in working order to move on to the next step.... Getting him CURED!

Harvesting Time

We got a call at 6:15am this morning saying that J needed to come down to the hospital right then because his stem cells are ready to harvest. Due to a lack of communication last night they didn't get us called until this morning. J headed out with his dad at 7:45am. He called me just a few min ago (8:50am) and told me that they may only have to do one harvesting because his stem cell counts are super high as well as his white counts! This process should take about 4 hours and they say it could make him really tired today and for the next couple of days. Once they've harvested the cells it could be as short as 2 weeks before he starts this next journey.

Daily Shots, City of Hope and Bandage Changes... Oh, My!

J's been home a week and I've been telling him that he needs to work on this post but since he worked all week on my computer when he was feeling up to it I guess I'll do it for him.... J's doing pretty good. He seemed to get over things a little bit quicker this round and is working from home this week. He is still neutripinic (low white count) and can continue to drop his whites up to 2 weeks after chemo. Every time he steps outside of the house he is to wear a mask especially if it is windy outside so needless to say we have been staying inside and away from people for the last week.

City of Hope
This is were J's next 2 rounds of chemo will be. They are called Stem Cell Chemo. He will be hooked up to a machine similar to a dialysis machine where they will extract his stem cells and collect enough for the 2 rounds that he will be doing. He will sit there hooked up to the machine for up to 6-8 hrs over a period of a couple of days depending on how much they can extract at a time. He should be starting this process sometime this week as long as his whites are up and there is a good amount of stem cells built up. He then will have any where from 2-4 weeks before he starts this next phase. He will be in the hospital for 10-12 days. They will completely wipe out his immune system which will make him very sick. The kids will not be able to visit him as he will be confined to his room and so sick he won't be able to move. Anyone that comes in to see him he will have to wear a mask for his own protection from any germs. The chemo should be for about 5 days and the rest of the time is spent giving him some of the stem cells back and building his immune system back up so that he can come back home. The doctors hope to have him home from his 1st round of this chemo by Thanksgiving and his 2nd round by Christmas.



Daily Shots
J has to give himself a daily shot of neupogen. This is to increase the stem cells that are needed to be extracted for the next stage of this chemo. We decided to go with the whole stem cell chemo because although the Salvage Chemo has a good shot of curing J the Stem Cell Chemo gives him a 15-20% better chance of curing him for good. J gives himself this shot every morning and C sits next to him and watches him as he fills up the shot and injects it into his belly. These shots give him some serious headaches and bone pain because they are doing their job: building stem cells. He can't take regular meds like Tylenol but is on heavy narcotics. Not his choice but the only thing he is allowed to take.

Bandage Changes

I am now officially the Caregiver to J... I'm solely responsible for making sure on a daily basis that his new PICC line (which now includes three lines and is much closer to the aorta) is flushed with Heparin everyday and on Sundays and Wednesdays his caps are changed (the blue things) and once a week that his bandage is changed. This means some serious sterile mask and glove wearing going on. I think I'm more nervous about keeping everything sterile the whole time I'm changing his bandage. I was supposed to practice the bandage change on Friday on Chester (the dummy) but since J's bandage needed to be changed due to having blood under it, I was the one who had to do it. I was so nervous... the nurse said the hardest part is getting the gloves on without contaminating them; otherwise you start all over again putting the dang things on again. J and the nurse said I did a really good job for my first time and J says that's because I'm a scrapbooker and so meticulous. I just think its cause I didn't want to screw up. Once J has started collecting (stem cells) I have a special caregiver class that I will be going to. They will give me a huge book that goes over everything I have to do to the house to make it safe for J to come home to. The class is for 2.5 hours! That is a lot of info...

Please continue to pray that J's whites/stem cells will continue to increase so that they are able to collect enough and maybe more than what they need this week. Thanks for the love and support. We really appreciate everyone and all you do for us.

Also a special thank you to the Heywood’s for sending that awesome package. The kids loved it. It was like Christmas to them and got them so excited for Halloween. We were able to open it up with Jeff at the hospital that last Friday 9/19. Thank you so much!

How Sweet It Is...

J is finally home... Hooray! We are all so excited. I was able to pick him up from the hospital around noon after dropping C off at school. We came home and he had his first meal which he has been able to keep down so far... Knock on wood. K came walking in the office after J had been lying down on the couch for a little while. She stood in the doorway holding her blanket and saying "Dada". When I asked her if she wanted to lay down she shook her head yes. I picked her up and she again said "Dada" so I asked her if she wanted to lay by J and she shook her head yes again. I took her out into the family room where J lay and she said "Dada" and he woke up and I told him that she wanted to lay by him. She just lit up. She was so excited and laid there for a few minutes so still and quiet. She even has the same blanket on her from when she was just 3 days old. Its hard to believe that these photos were taken only 18.5 months apart. She still is his little sweet heart...
This picture is from when K was just 3 days old. J had come home from his 1st day of his 3rd round and they took a nap together. (this was also a Monday.) (I'd just post just the picture but my computer is DOA and my computer tech is crashed out on the couch.)

C came home from school and the first thing he asked J was how the hospital was... He's pretty extatic to have his dad home and so am I... That means no more having a 5 yr old insist on sleeping in my bed and no more driving back and forth to the hospital... at least for a little while.

Day 5 of Chemo

I thought I'd update you all on J. He is finishing up day 5 of chemo tonight probably around 11pm. We all wish he could pack up and come home at that time but he has chosen to stay and have them continue an IV to keep him hydrated through the night and through Monday morning. He hasn't been able to keep much down and as much as we'd really like to have him home we'd rather him feel better and be hydrated so we don't have to go back a couple of days later. He's been really tired this round and with all the nausea meds they've given him to try and keep him from throwing up he says he always seems dazed. Although when I've taken the kids to visit him he is pretty with it which is good because the kids love going to see him and C especially loves playing on the computer in the lobby where we meet J. Yesterday he was playing on it looking at Google Earth like he always does and asking J what certain places were that popped up on the screen. I walked over to look at the screen after C had closed out the program to see that C had changed Google Earth to his name. That kid defiantly takes after his dad. I told C who has been telling everyone who would listen that his dad would be home on Sunday, that J wouldn't be home till Monday and thinking he'd throw a fit he was more than understanding and was ok that J would still be in the hospital one more day. Before J went into the hospital this time he sat C down and explained to him that he had to go back. C said yeah, because your back hurts really really bad. (this is why he thought J was in the hospital the first time. We didn't know how to explain what cancer was to a 5 yr. old) This time J told C that his back was better but that he had to get special medicine for the cancer that was in his body. Without hesitation C piped up and the special medicine kills the cancer. That kid amazes me... we have never talked to him about cancer and how the medicine kills cancer. I believe he is so in tune with the spirit that it helps him to understand things that even some of us adults do not. Please keep J in your prayers that he will be able to get hydrated and keep food down so that he can come home and stay home until his next round. Thank you for all your love and support.