Updates on Josh

Josh's Memorial Service

2008-11-08T16:42:00.000-08:00

My family and I would really like to thank everyone who came to Josh's memorial service. It was so nice to see how many people really cared for my brother! Thank you all for your prayers, kind words, meals, flowers, cards, etc. If you didn't get to sign the guest book, please let me know and we can arrange a time for you to sign it.

I would like to apologize to my grandmother! I'm so sorry I forgot to put you in the obituary! It should've said survived by his grandmother Deloris Parrish of Sierra Vista and for some reason I forgot to write that! Jeff and I wrote the obituary together and we've never had to write one before so we did the best we could. Jeff would also like to apologize to everyone who donated time to Josh, Rosie, and Mom. He wanted to mention you also and forgot! We're so sorry!

I would like to let everyone know that after the service, Dennis came up to me and told me that a few people told him that they accepted Christ as their savior when he gave the invitation during the service. If you were one of those people I would love to hear from you so I can put that in the book that I'm making. You can email me at memoriesofjosh@hotmail.com When he told me this it made me happy to know that Josh and his faith had made such an impact on you! I consider that part of the "silver lining"!

Memories for Josh

2008-11-06T15:28:00.000-08:00

Over the last several days, I've really enjoyed hearing other people's stories and thoughts about my brother. It's really nice to know how highly everybody thought of him! I created an email account- memoriesofjosh@hotmail.com I would like to ask that anybody who has comments, stories, fond memories, pics., etc and would like to share them with us to please email them to me. When things calm down I would like to take all of that and make books for his boys to have. We have lots of stories to tell them about their Daddy, but I thought it would be nice for them to hear them from other people as well.

Funeral Services for Josh

2008-11-03T18:14:00.000-08:00

The memorial service for Josh is going to be held on Friday, Nov. 7th at 1:30pm. The service will be held at the Main Post Chapel on Ft. Huachuca.

If you do not have a sticker to get on post you will need to stop and get a visitor pass. Passes can be obtained at the visitor's center at the Main Gate; please be sure you bring your Drivers License, Registration, and proof of insurance. All adults in the vehicle will be asked to present picture ID at the gate.

Google Map to Post Chapel:
http://maps.google.com/maps?f=d&saddr=&daddr=31.554933,-110.355735&hl=en&geocode=&mra=dme&mrcr=0&mrsp=1&sz=16&sll=31.555692,-110.35672&sspn=0.007533,0.013518&ie=UTF8&t=h&z=16

2008-11-01T21:08:00.000-07:00

Josh isn't in pain anymore. He went to be with the Lord shortly after12 this afternoon. He was surrounded by his family and friends.

Thank you all for your prayers and support! Please continue to pray for the whole family!

I will post an update as soon as the all the arrangements are made.

I'm sorry but I just can't write anymore today!

2008-10-30T10:49:00.000-07:00

Sorry it's taken so long to update, it's been really crazy and I was having a hard time finding the right words. I'm not very good at this!

Josh is home from the hospital. The Dr.'s are saying that right now the most important thing they can do is manage his pain. They sent him home with a pain pump and hospice is coming to the house to take care of that and anything else he needs. His blood count is still really low and his calcium levels are high. In 2 weeks they will re-assess what's going on and Josh can decide if he wants to do the next round of chemo or not. Mom has taken off from work to be with him and Dad is still home with a bad back! Please pray that God will give Josh a miracle! Please pray that we can keep him comfortable! Pleas pray for God to give our whole family strength!

In the hospital again

2008-10-28T08:49:00.000-07:00

Just wanted to let everyone know that Josh was admitted into the hospital last night. He had a blood clot in his colostomy and they told him to come up and get checked out. His blood count was low so they admitted him and gave him a blood transfusion. When Mom called this morning he told her they were most likely going to keep him in but he didn't say anything else. Mom is on her way up Tuscon now, so I will update this again when we find out anything more! Please keep him and our family in your prayers!

New Chemo

2008-10-22T10:17:00.000-07:00

Just wanted to let everyone know that Josh started a new chemo last Thursday. He went to the Cancer Center in Tucson on Thurs. and Friday last week for two treatments and then this week on Mon. Tues, and today. After this I think he waits 3 weeks and does it over again. He's been really tired! Please pray that this treatment will work and that he will get some relief from the pain!

He's out of the hospital!

2008-10-10T21:12:00.000-07:00

Mom brought Josh home from the hospital this evening. One order said he needed to stay on a liquid diet but then they told him he could eat whatever he could tolerate! Who knows! I don't know a lot of the details but one of the new things is that he will go back to Tucson on Thursday for a new type of chemo. Thankfully he gets to do it at the Cancer Center and doesn't have to go to the hospital. As of right now he will stop the treatments in CA. Sorry this is so short and doesn't have much info. I will update it when I have more. Thank you for all your prayers while he was in the hospital. Please continue to pray that he will be able to eat, that he will get some relief from the pain, and that they will find something that will work to shrink the tumors!

2008-10-08T17:14:00.000-07:00

The scan has been read by the Dr. now and there is no blockage! Thank goodness! They gave him a patch for the pain and so far it's working. He's been able to eat a little bit and has had "output". They're going to keep him overnight to make sure everything is working! Please continue to pray!

2008-10-08T10:33:00.000-07:00

Mom and Dad went to Tucson this morning to be with Josh.

Mom just called and said that they're waiting for the official reading of the scan, but the surgical team just came by and said that they don't see a blockage. They think it might be constipation from all the pain meds. They're trying to get him a patch for pain relief. Right now they're not letting him eat or drink anything just in case. Josh is hoping that while he's there they will go ahead and scope him just to make sure and that may help push stuff out. They are also talking about starting him on another type of intense chemo, but they can't really decide on that until they make sure that there isn't a blockage.

I will post more as soon as I hear anything so check back occasionally. Please continue to pray that everything will be ok.

2008-10-07T21:44:00.000-07:00

Below is what I copied from Josh's website. He wrote this after his treatment last week. He went to Tucson today for a Dr.'s appt. and got admitted to the hospital this evening. They're afraid he's got a bowel obstruction/blockage. They were supposed to do a CAT Scan and and MRI but for some reason it didn't get done tonight. I guess he's supposed to get it tomorrow, but for now they're keeping him in the hospital. Please pray that if it is a blockage that it will be easy for them to fix it w/o surgery! Please pray for some pain relief and that he'll get to come home very soon! He hates being in the hospital! Also please pray that they'll know which treatment to do make things better and keep the tumors from growing.

They went ahead and gave me another treatment. I have to meet with my Tucson doc to see if we're going to continue with this or not. I'm thinking that I'll stop this treatment and do another high dose chemo regimen like the one I was on before. I think it's another 5 days in the hospital for each treatment and again every 3 weeks. If I can get through 1-2 of those treatments, it may get me to a better state and then I can go back to the ET743 and maintain it until we can find something else. At this point, I think we really just have to find something to reduce the mass to get me comfortable again. I'm getting worse and on top of the pain and not sleeping, it's getting really hard to eat. I've lost some more weight and can't really eat many solid foods. I've been eating a lot of soups and pudding. I'm dying for some Taco Bell Chalupas, but last time I did that I was up ALL night in pain.

2008-09-20T12:33:00.000-07:00

Below is the latest update from Josh's trip to CA this last week.

They screwed up again so I spent 2 extra days out there. I don't understand how a doctors office can operate like they do. My scan was Monday and my treatment was supposed to be on Wednesday. I did the math and it was cheaper for me to stay in Santa Monica between the scan and treatment rather than fly in and out each day. The scan on Monday went smoothly and afterwards I went into the Sarcoma Center to get some blood work done so I could get my next round of treatment on Wednesday. They finished what they needed to do, but failed to tell me they were done and let me just sit there for about an hour before asking me why I was still sitting there. It's one big open room and they had passed by me I don't know how many times. Was it so hard to say "that's all for today"? I clarified that I didn't need to do anything else until Wednesday and that I could come in first thing when they opened to the start treatment. They told me that was it and that they would get me in and out Wednesday morning so I could get home to my family.

So Tuesday I went down to the 3rd St. Promenade to catch a movie (couldn't think of anything else to do). I had a bit of time to kill so I walked around and found a cool toy store that had LOTS of Star Wars toys. They had a few really cool vintage toys, but money is tight so I had to restrain myself. I went in first thing Wednesday morning (first one there), got my weight, and sat down in one of the chairs. After about 15 minutes they came around to check my vitals and accessed my port-a-cath and drew some blood. After another 20 minutes or so I heard them ask if it was OK to start me. I heard the head nurse say no and that I need to talk to the doctor. I asked, across the room, if there was a problem with my PET scan from Monday and she said "yes it wasn't good". So I figured that there had been growth since my first treatment and that they were not going to let me continue. The doctor came in and walked past me several times. I asked one of the nurses what was going on and she went to check. I heard the head nurse tell her that they wanted me to continue with the treatment and to go ahead and start me. After some time had passed (they still hadn't started me), the head nurse came over to me and said that the drug company screwed up and that my medicine wasn't there. She said I needed to stay another day and that my drugs would be there Thursday morning around 10:30. I'm a grown man but I'll admit that it took all of my strength to keep myself from crying. I re-emphasized how expensive these trips are and said that they need to make sure my drugs are there before I fly out there. They should have verified that my drugs were there on Tuesday knowing that I would be there Wednesday for treatment.

I was there for about another 2 hours before we finally got everything settled. The drug company agreed to pay for the additional night at the hotel, the additional day of the rental car, and the cost of changing my flight. The only thing I don't get back is the extra day away from my family. What else could I do, so I got out of there and went back to my hotel. Luckily I was able to get my room back and then I spent the next hour changing my flight and rental car reservations.

I went in Thursday morning a little early to make sure that they got me started on time so I could make my flight. Everything went pretty smoothly. I was hoping to get done in time to make an earlier flight (since they paid to change the ticket, my ticket became a normal ticket so it could be changed again without a fee). They finished up and said I was good to go. I still had time to make the earlier flight. I made a quick trip to the bathroom and when I came out I heard them say "oh, there he is". AARGHH! .... NOW WHAT? They told me that I need to stick around because they needed to do another EKG. I asked why and they said that when they examined me earlier I had an irregular heartbeat and to be safe they needed to do it. Both of the examine rooms had patients in them so I had to wait until a room was free. My chances of getting on the earlier flight were diminishing. They finally got me in and did the EKG and I got out of there as quickly as I could. I made it to the gate of the earlier flight with 20 minutes to spare. Luckily the flight was pretty empty so I got a good window seat.

Hopefully the next round will go smoothly. I'll be doing day trips every other week from now on. I'll be sure to leave enough time between my flights in event of delays.

Thanks again for all the prayers, please keep on praying.

-Josh

2008-09-17T16:43:00.000-07:00

Below is what I copied from Josh's 4wheeling site. Sorry it's taken so long to update this. Like normal things are pretty busy around here.

After some hassles from the California Doc's office, I finally got everything taken care of to start the new treatment. To keep this short, lets just say I had to make a few trips out there to get all the paperwork, tests, and scans done. I finally got my first treatment of the new drug last week.

I've been having the side pains again and I'm back on the pain killers (3 times a day). Today I met with my Tucson doc for my monthly exam. I showed him a new lump I found on the right side of my ribs near the lump I had found a month, or so, ago. This new lump felt harder like it was bone. He examined the area and said that there are actually 2 new lumps and he said it wasn't bone, but felt like they are attached to the ribs. He feels that they are tumors based on how they physically felt. Best thing we can do is hope that this new treatment will be effective in either getting rid of them, or keep them from growing. They are getting a little painful when I lay on my right side. Every once in a while it feels like needle pokes.

Next week I'm out there for 3 days because my scan is on Monday and my treatment is on Wednesday. It was more expensive for me to fly home and come back, so I'm just going to stay the extra day. Maybe I'll actually get out of the hotel room and drive down the street to the beach. I think I'm about a mile from the beach each time I go out there and I still haven't been down there. Either that or maybe I'll find one of those go-kart tracks and get a few laps in.

Then I'll be going out for day trips every other week after that. I'll have PET scans here and there that will require extra trips, but those should be more spread out. Maybe I should just move to California. I think I could rent a loft apartment for about what I pay for my mortgage here.

He left for CA Monday morning for the next round of treatments. Please pray that things will go better this time and that he'll have a safe trip. When he went out the first time he was told that he had done everything they needed him to do and that he could go home. After he flew home they told him they still needed him to do a few other things so his next trip out lasted longer than it was supposed to.

Having to go to CA so often now is becoming physically and financially draining. He's thinking about selling his "rock crawler" (technically I think it's called an FJ40 Land Cruiser) to help pay for his trips to CA. Please pray that everything will work out. Please pray that God will give him the strength and the money he needs to make these trips. If anyone knows someone in the Santa Monica area that might be willing to let Josh stay with them or help with transportation, please let use know. Thank you again for all your prayers and support! Please continue to pray that these treatments will work and that he will get some relief from the pain.

2008-08-26T20:31:00.000-07:00

Josh and Ethan at Disneyland

Last week Josh went to Tucson for a Dr.'s appt. They were able to go in with a needle and remove 2 1/4 liters of fluid from his abdomen. This alleviated some of his pain! He was even able to go into work for a little while last week!

He also had a CAT scan done that day. I guess the scan showed that everything was pretty much the same. At least the tumors haven't grown, especially since he hasn't had a treatment in a long time!

He decided to start the new treatment in CA. He will fly out tomorrow to fill out the paperwork and then he will have a PET scan on Thursday and then fly home after that. Below are some things I cut and pasted from his 4-Wheeling site.

Aug. 13th- I met with the TX doctor yesterday and he won't operate either. He at least took the time to explain to me why an operation is not possible at this time. Basically the 2 main arteries in my pelvis are encapsulated by the tumors so removing the tumors is not possible. If only one was encapsulated then there would be a chance, but that's not the case.

He felt that tumors are showing a lot of necrosis and said that cells will swell as they die so that may be why some of the tumors appear bigger and I have more pressure. Now I'm torn between continuing on my current treatment to see if things improve (since there is more necrosis, maybe I just need to give it more time to start shrinking), or switching to the new treatment hoping for faster results but not knowing what it will bring me. I have to make a decision in the next day or so and I just don't know what to do.

Aug. 15th-I met with my doc in Tucson yesterday. I was all prepared to discuss the 2 treatments (my current ET743, and the new one MKC1106-PP) and make a decision.

My doctor does not want me to wait for the OTHER treatment (R1507 {an IGF-1R inhibitor} combined with Everolimus {an mTor inhibitor}). He doesn't feel like I have time to wait for it (even doing one of the other treatments while I wait). He said if it was him, he would forget ET743, and MKC1106-PP and do the other IGF1R inhibitor that I can start in California right now. This is not R1507 but it is the same type of drug, just a different manufacturer.

So we have a monkey wrench. A third option that I wasn't really considering until yesterday. Both R1507 and Everolimus have shown great results as mono-therapies so combining them theoretically should be even better. There is no guarantee, however, that this new trial will start in the next month or two, or ever for that matter. Many of these trials get canned before they ever even start. If the IGF-1R treatment alone works, then I'm that much better off. This is the treatment that I've wanted to start for the past few months, the only reason I didn't start it for my last treatment is because I heard of the upcoming one. The doctor says we have good data on the IGF-1R working by itself, so why wait?

I've had MANY people praying that I make the right decision, and yesterday (when it was still just between the 2 drugs) I had no idea which way to go. I now feel strongly that my new 3rd option (IGF-1R alone) is the way to go. I'm going to call the doctor in California in the next few minutes to discuss this 3rd option, so if there is no problems with me starting it, that's the way I'm going.

Aug. 19th- Thank God, I got some relief today. They were able to drain 2 1/4 liters of fluid from my abdomen today. It wasn't really painful. I felt a little stick when they poked me for the lidicain, then a pinch when they pushed through the peritoneal lining. They had to do it 3 times before they got it to drain. First time the catheter kinked and the 2nd time it got clogged. 3rd time was the charm. My abdomen looks much better, I can actually see where my belly button should be. I have a bit of a valley across my abdomen when I lay down. Much less pressure, hopefully tomorrow the pain (that I've been having in my side) will go away. It already feels a little better tonight. I've been soaking through the bandages though. It looks like the fluid from the adema has found a route out (through the needle hole). This fluid is different than what they pulled out of my abdomen. This fluid is in the outer tissue. I guess the more it drains, the better it is.

After the paracentisis I had my CT scan. I should hear the results in the next day or two. This is the next step to begin the new treatment.

Thanks again for all the prayers. I can't tell you how much I appreciate it.

2008-08-13T20:49:00.000-07:00

Josh and Aiden at Disneyland.

Josh got back from TX this morning. The surgeon he went to see told him he wouldn't do the surgery either. He told him that it looks like some of the tumors have become "jelly like" and that they might be able to do paracentesis and withdraw some of it to give him some comfort.

He's going to Tucson tomorrow to see his Dr. They're going to discuss what treatment he should go with. Please pray specifically for God to lead him to the right treatment.

Info about the new trial drugs

2008-08-07T10:20:00.000-07:00

Here is the email Josh just sent me about the trial in Tucson that he's going to start.

He flies out to Texas to see the surgeon on Monday. He has a friend named Chris (who also has DSRCT) that will pick him up and take him to the appt. He will also be staying with him while he's in TX. The surgeon that he's going to see is the same one who did Chris' surgery.

The new trial that I'm going to start is MKC1106-PP. It's a phase I trial that has already completed the "low dose" portion of the trial. I will be in the "high dose" trial. This drug targets 2 antigens found on some tumors PRAME and PSMA.

"PRAME is found in lung cancer, breast cancer, ovarian cancer, renal cancer (kidney), pancreatic cancer, and colorectal cancer (colon and rectum) cells. PSMA was originally found in prostate cancer cells and later found also in the blood vessels which supply lung cancer, breast cancer, ovarian cancer, renal cancer, pancreatic cancer, colorectal cancer, and melanoma (skin cancer)."

Basically I'll get an IV shot and 2 shots directly into the lymph nodes in my groin (guided by sonogram) 2 times a week, every other week. I'll get the plasmid dose on days 1, 4, 15 and 18, and the peptides on days 29 and 32.

Possible side effects seem minimal: Headache, fatigue, joint pain, and soreness at the injection site. This drug does not attack all fast growing cells, just the targeted cells. This should keep my blood counts up so hopefully I'll start feeling better.

GOOD NEWS!

2008-08-06T09:53:00.000-07:00

I'm running out of recent pics. so here are some older pics. of Josh & his family.

Here's an email I just got from Josh! We are all so excited for him! This is what we've been waiting for! Thank the Lord! Please let this be the treatment that does it and thankfully he won't have to travel too far!

My Tucson doctor called me yesterday. I told him about the problems I've had over the last 2 days and that I haven't had any output from my colostomy all day. He said that if I didn't have any output from my colostomy by morning that I needed to go up to Tucson (this morning I've had some output, so I'm not blocked). He told me that the results of the tests on my tumors were in and that they had the 2 receptors needed to qualify for the trial in Tucson. I told him that I had my appointment next week with the surgeon so depending on that, I could start the new trial as early as the following week (the 18th) if he won't operate, or after I recover if he will do the surgery. I have to be 28 days without other treatment to start the trial in Tucson, so the week after next will be past that point. So either way, I'm getting a new treatment to try until the other trial opens in San Antonio. I talked to the head nurse at the clinic in Santa Monica and she said I could stop my current treatment and try something else, then come back if the new treatment doesn't work as well. So I can always go back.

2008-08-04T22:25:00.000-07:00

Aunt Sue, Josh, Rosie, Uncle Bill, Ethan and Aiden

Here's the latest from Josh!

No pilots had picked up my flight through Angel Flights yet, so I canceled and now I have my flight scheduled for next week to Austin. I found direct flights using ExpressJet and for the round trip it's just over $200. Everywhere else had stops in other cities and they were about $330 each way. There is another DSRCT patient that lives in the Austin area (he's the one that gave me this doctors contact info, also had his surgery by him). He's offered his guest room and offered to pick me up from the airport, take me to my appointment and take me back to the airport. So this trip isn't going to be bad at all. Looks like God is opening the doors. I don't think it could have worked out better. Now we'll just have to see what the surgeon says.

2008-08-02T11:40:00.000-07:00

Josh and Ethan at Disneyland!

Josh sent me another update this morning. Below is what he wrote! Please pray that God will lead him to make the right decisions!

The Texas surgeons office called my Tucson Oncologist and setup a surgical appointment for the 12th. Now the problem is that I'm supposed to start my next round of treatment in California that day. My thoughts right now are if Angel Flights hasn't had any pilots pickup my flights for that trip, then I may cancel and go ahead to Texas for the appointment. If Angel Flights has a pilot lined up, then I won't cancel. If the doctor agrees to operate, then not doing this next treatment will allow me to have the surgery sooner since I won't have to wait for my counts to recover. I'd kind of like to have the doctor look at my CT scans before I fly out there in case there is something obvious that would make him not want to operate, but at the same time, I'd like to see him face to face so he can see the swelling and I can explain to him in my own words how badly I want the surgery. Another wrench has been thrown into my decision on surgery though. My wife told me the other day that she doesn't want me to do the surgery. She doesn't think it's the right choice but hasn't said anything since I was so for it. I still feel deep down that this is the right thing to pursue.

As far as my new drugs go. I stopped taking the Lyrica to see if that would help with the drowsiness. I still have random bouts of drowsiness and some nausea/vomiting, but the pain is still under control, so I'll continue on without the Lyrica. I started taking the Ritalin again today so we'll see if that helps. I also started taking Milk of Magnesia twice a day. That has really got my colostomy moving. With taking just the Senokot-S I was changing my bag 2 times a day if I was lucky. Since I started the Milk of Magnesia, I seem to change it about 5 times a day. I'm having much less cramping. However my appetite has gone down. I'm still eating OK, but I don't feel like eating as much as I was.

2008-07-31T16:30:00.000-07:00

Hi everyone! Below is the latest on Josh. Please pray that God is leading him to the decisions he's making! Please pray that he will get some relief from the pain and the swelling.

I met with my Tucson doctor yesterday. He really doesn't want me to have surgery. He thinks it's a bad idea. He is, however, going to send a referral to a surgeon in Texas at my request. The doctor in Texas did a surgery on another DSRCT patient, that I've been talking to, that no one else would do. His colleagues called him crazy but he said he'd do the surgery again in a heart beat. We'll see what he says after seeing my records.

Tuscon doc says I look way better than he expected me to look considering everything. So I guess that's encouraging. He says there is really nothing they can do for the swelling.

I told him that I was using Perkoset every 2 hours for the pain, but I've read that it's not good for the liver. The past couple of days I switched back to the Dielodin which last for about 4-5 hours before I have to take it again. The biggest problem with the Dielodin is that it takes about 1.5 hours to kick in, so I'm in pain unless I overlap my dosage. The Dieloding also makes me puke occasionally and makes me itch as I come down. He prescribed me a slow release Oxycontin that should last me 12 hours, so I'll take that twice a day and I should stay above the pain threshold. He also said that this dosage should take care of the pain without making me feel drugged, so maybe I'll be of some use now. I just started it last night and I took it again this morning so we'll see how I feel on it. So far no pain, and just a little druggy feeling. Mostly I think it's making me drowsy. I'm also taking Lyrica, which is also a long lasting pain killer, twice a day. The combo seems to be good so far.

The clinical trial that my Tucson doc wants me to start (in Tucson) is still on hold pending the result of the tests they're running on my tumor samples. The tests should take another week. I told him about the one starting in the next 2 months that's the R1507/Everolimus and he thinks that would be a good trial to get into, however he kinda hinted that I shouldn't wait for it and I should start the other IGF-1R inhibitor that Santa Monica doc wanted me to start. I still feel like the the 2 drug combo would be worth waiting for so in the mean time I'm going to continue my current treatment (ET743).

I did the math and I'm actually spending between $446 and $500 per trip for just the flight, hotel stay, and cab fare. The difference is whether I book my flight early enough to get the "Get away" fare. I called Angel Flights (a volunteer group that arranges flights for medical patients using private pilots/planes) and got setup with them. I pushed my treatments back a week to make sure my counts would be good enough for treatment so we can avoid changes with the flights. Since these are volunteer pilots (using there planes, fuel, and time) it's best to have a firm date/time for travel. Many of these pilots take off from work to be able to fly patients. This will make my treatments every 4 weeks instead of every 3. What they do now is put my travel dates into a system and pilots can pick a flight that they are willing to do. So now I wait until a pilot or several pilots pick my request. If this works out, it will save us $246-$300 dollars each trip. Plus they'll be able to fly me into Santa Monica, so cab fare will be cheaper too.

I think that's it for now.

2008-07-20T22:50:00.000-07:00

Below is what Josh posted on his 4 Wheeling site. He said I could cut and paste it to the blog, so here is the latest update. Please continue to pray for him and our family! Please pray for some pain relief for Josh and that God is leading him to the right trials/studies and Dr.'s .

I had my CT scan and met with the Tucson surgeon last week. The CT scan showed that the tumors are stable (even though it doesn't feel like it). The Tucson Surgeon will not operate because he doesn't feel like he has enough experience with this kind of cancer.

I finally made it out to Santa Monica on Thursday. My doctor there wanted to stop my current treatment (even though it's keeping the tumors stable) because he wants to see the tumors shrinking. He's worried about the distention in my abdomen. The new trial he wanted me to start in another IGF-1R inhibitor. This is the same kind of drug that I wanted to get started on when I first went to Santa Monica, just by a different drug manufacturer. There is another trial that is supposed to start in San Antonio around Aug/Sept. This trial includes the IGF-1R inhibitor and a second drug which is an mTOR inhibitor. If I start another IGF-1R or mTOR inhibitor in the mean time, it will exclude me from the upcoming trial. So I've decided to stay on the current drug until the new trial opens.

The doctor in NY called me while I was in Cali. yesterday. He won't operate either. He says the tumors are too extensive. I haven't been able to talk directly with him, so I'm going to try and get a hold of him on Monday to beg, but it doesn't look good. I have 2 other doctors I can try, but I think if the doctor in NY won't do it, then no one will. We'll see.

I'm got back from Cali. yesterday so now I'm just trying to recover from the treatment. Rosie bought me some compression stockings and that has gotten rid of the swelling in my legs, but I can get the swelling in my scrotum to go away. Talk about painful!

2008-07-06T20:40:00.000-07:00

I just got an email from Josh that tells more about what's been going on lately. I'm just going to cut and paste it so I don't have to paraphrase it and mess it up!

June 28th-
Well, had another appointment with my Tucson Doc on Thursday and we discussed a new clinical trial he's hosting. They did a blood test at my last appointment and I have a genetic marker that is for some type of immunity. Now all they have to do is verify that my tumor has 2 specific receptors that will make me fully qualify for the trial. They are currently testing one of the tumors they removed during one of my surgeries for this.

I've been having a lot of swelling below the waist. Basically all the fluids drop down there and my circulation isn't good enough to bring it back out. The tumor in my pelvis is blocking off all the flow. I've been having a lot more pain in my pelvis, especially by bladder. I've heard really good things about a surgeon in New York and I've asked my doctor to refer me to go see him. My doc would like me to meet with another surgeon in Tucson. So I have an appointment to see him after my next CT scan in another week or so. If he's willing to do the surgery then I'll probably let him since it will keep me here locally. If not, the doc in NY is known to do the surgeries that no one else will do. I should be down for a little over a month or so if I get the surgeries. Basically I want the tumor in my pelvis removed, which will also allow them to reverse my colostomy. And if they're willing I'll have another surgery to remove as much of the tumors in my abdomen that they can.

I've also found another lump on my back that seems to be protruding from between two of my ribs. Doc said it was definitely a new lump, but didn't say if he thought it was a tumor or not.

July 1st-
Treatment got canceled for this week. My counts are still too low and they're not open on the 4th, so it should be next week now. If I can't go on Tuesday, I'll have to wait another week because I have my CT scan and my surgical appointment on Thursday. Sloan-Kettering called me today to verify insurance and personal info. They said the doctor will review my records and they'll call me back to schedule an appointment. This is the doctor in NY city. He's done many surgeries on other DSRCT patients and I feel he is most qualified to do my surgery. However, if the Tucson doc is willing to remove all the tumors possible, then I'll have the surgery here to stay close to the family. I guess we'll find out next week.

2008-07-06T19:49:00.000-07:00

Aiden and Josh at Parker Canyon Lake-
We all went fishing together last weekend. This was the first time the boys had ever been fishing!

I know it's been a long time since I've updated this, but I didn't have a lot of info to put on. He went to CA about 3 weeks ago. The treatment went well and he was supposed to go back for another one last week. His blood count was too low and because of the holiday things got postponed. This Thursday he has a Dr.'s appt. and a scan so he won't have the treatment this week either. His Dr. in Tucson is saying that he might be able to have another surgery to take out more of the tumor(s) and alleviate some of his pain/discomfort. He's anxious to get the scan done to find out if he can have the surgery or not. Hopefully the scan will also show that the tumors have shrunk even more since the last scan! Please pray that he will get good results all around! Please pray that the Lord will tell us if he should have the surgery or not!

2008-06-10T18:06:00.000-07:00

Good news! The results of Josh's blood count are back and it's up high enough for him to have the treatment in CA. He leaves on Thursday and will be back on Friday. Please pray for a safe trip!

2008-06-09T15:28:00.000-07:00

Josh was supposed to leave for CA tomorrow, but his blood count is too low. He had another blood test done today to see if the count has changed. Please pray that the count will be up and that he can leave for CA on Tuesday or within the next few days.

2008-05-30T09:42:00.000-07:00

Josh had his Dr. appt. on Wednesday. They did the ultrasound and said that he didn't have enough fluid to do the parencentesis. They guy said he would do it if Josh really wanted him to, but there was a risk that he could get an infection from it. Josh decided not to do it. He also found out he had a sinus infection so they gave him medicine for that. He will fly back to CA in 3 weeks for the next treatment. Please pray that his blood count will be high enough and not cause any delays.

2008-05-27T15:50:00.000-07:00

Josh's treatment in California went well. He goes back in another 3 weeks, but this time he'll be flying. The trip by car was just too long and unfortunately they had horrible weather on the drive home and it made it take a lot longer. He goes to Tucson this Wednesday to see his Dr. up there. They're going to discuss doing a parencentesis, that's when they do an ultrasound to locate the extra fluid in his abdomen and then go in with a needle and take out as much as they can. Hopefully this will alleviate some of the swelling, pain, and pressure he's feeling. He's hoping they'll do it that day, but he's not counting on it! Please pray that his blood count will be right for the next treatment, that he'll have a safe trip, and that his Dr.'s appt. on Wed. goes well and that they will do the parencentesis right away.

My family and I would like to ask all of you to add another family member to your prayer lists. We just found out that our Uncle Howie (our mom's brother) has a malignant brain tumor. He starts radiation and chemotherapy this Thursday. Please pray for strength and comfort for him and his family!

GOOD NEWS!

2008-05-20T11:16:00.001-07:00

Thank the Lord! Josh's blood test results from yesterday are in and his count is up. It's high enough for him to have the treatment in CA so Frank (his father-in-law) and him will leave tonight. They will stop for the night in Phx. and stay with our Aunt Peggy and then leave early, early Wed. morning for CA. They should be home Thursday night. Please pray for a safe trip!

2008-05-19T17:35:00.000-07:00

Josh called about his blood work this morning and found out that the count is too low to have the treatment in CA. They said it was low, but not low enough to give him a transfusion! He had more blood work done today and will call tomorrow morning for the results. He won't know what he's going to do until he gets those results. If the count is up high enough, he and his father-in-law will drive to CA for the treatment. If it's not up he'll have to wait and see what they tell him to do. I will post an update as soon as we hear anything! Please pray that it will all work out!

2008-05-17T22:48:00.000-07:00

I'm so sorry about being so far behind on this! Here are a couple of updates!

1.) Josh had a scan done on Thursday. On Friday they gave him a CD with the results but didn't discuss it with him. I guess he's just supposed to take it with him to CA and they're supposed to tell him about it. He looked at the info on the CD and from what he can get from the "DR. Language" is that there has been a decrease in the size of the tumors and an increase in necrosis. From what I understand an increase in necrosis is good because it means that the tumors are decaying. I hope I'm getting all this right. So PRAISE THE LORD, it sounds like things are working! As long as his blood count is good, he will leave Monday for CA. He's going to drive to Phx. Monday afternoon, stay at Brett's and then the two of them will drive to CA Tuesday morning and hopefully be back on Wed. Please pray that things will continue to go well and that he will have a safe trip to CA and back!
2.) Jackson Joshua Liam Crowley was born on May 8, 2008! (Three days before Mother's Day!) He was 8lbs. 2 oz and 19in long! Josh and Gilma (Josh's mother-in-law) were his first visitors. Jackson got to meet his uncle within the first hour of being born! Some people are saying I'm crazy for giving him two middle names,(especially my husband and Josh) but there is a good reason behind it! Of course the first part is after Josh, but Liam is a name that Josh had always wanted to name one of his boys and he never got to. So in honor of Josh I decided to use both names. I think it sounds like a very strong name and he can always use the initials when he has to write it! I've posted a picture of Josh with Jackson and as soon as I get more I will post them also.

3.) Our mom won the contest for Sierra Vista's Greatest Mom! We would like to thank all of you for your votes and your support! We couldn't have done it without all of your help! She had 80 votes! The next person under her only had 37, so the contest wasn't even close! When we told her about it, she of course cried and said she didn't deserve it! Her first bouquet was delivered on Mother's Day and she's supposed to get one every month until April of 2009! When they delivered them, they also sent one to me for nominating her!

Ok well I hope this catches everybody up and I hope I've found all the mistakes! You'll have to excuse me while I'm getting used to the sleepless nights again! When I re-read this I found several mistakes so I'm sure there's more that I didn't catch! Please continue to pray for Josh and the rest of our family! We are so thankful for the good results and we're praying it continues to go well!

We Need Your Help!

2008-05-05T17:37:00.000-07:00

Hi! I've emailed several people, but I know that I don't have the email addresses of everyone who checks this blog. I would like to ask all of you for your help to make this Mother's Day very special for our mom! One of our local florists (Bloom Country) is having a Mother's Day Contest and I have submitted Mom as one of the nominees. (SHHH! She doesn't know!) If she's the winner she will win free flowers for a year! I think that just might brighten up her year a little! All you have to do is go to the website, register, and then vote for Mom by clicking on our family picture that I submitted. (If you don't know which one it is, underneath our picture it says Submitted by Julie C. Added 05/02/2008) The website is www.bloomcountry.com I know all of you have wonderful mother's, but if you haven't entered your mom in this contest, I was wondering if you could help me and vote for our's! I entered her in another Mother's Day contest with KVOA 4 News but we haven't heard anything on that one yet and I'm afraid that one has so many entries that we have a better chance winning this one. If you could also pass this on to other friends and family members who would do this for me I would really appreciate it. The contest ends on May 10th so please get your vote in as soon as possible. Right now she's winning and I'd like to keep it that way! :)

I would like to thank all of you in advance for you help and I will let you know if/when she wins! I would also like to thank you again for all of your prayers and support over the last several months! This is such a difficult time for all of us and we couldn't make it without your prayers and your friendship! Please continue to pray for Josh and the rest of our family as we wait for God to heal Josh!

Second treatment in CA

2008-05-05T07:23:00.000-07:00

Josh got back from his second trip to CA on Thursday. This time he had to stay an extra day. They didn't call him before he left to tell him that his labs showed that his blood count was too low. He had to get a shot to boost the count and then the next day they gave him the chemo. He's supposed to have a scan on May 14th and then go back for the next treatment on May 20th. Thankfully he gets to have the scan done in Tucson! Please pray for great results! I'll let you know as soon as we know anything.

2008-04-24T14:07:00.000-07:00

Here are some pictures from Josh's surprise birthday party! Jeff made the cake to look like Josh's Toyota Land Cruiser!

I'm sorry there haven't been any updates lately. Josh said there was info he needed to give me to correct somethings that he told me before. The easiest way for me to get the info correct is to just cut and paste what he wrote.

Met with the Dr. in Santa Monica yesterday. Unfortunately the R1507 trial is temporarily closed. This is the one that targets the IGF1R receptor. He hopes to have it re-opened in about 2 months. In the mean time they put me on the ET743 trial. This drug "Yondelis" is a form of chemo so the side effects will still be present. They said it won't be a fraction of how bad the AIM side effects were, but I should still have the nausea and low blood counts. This trial is every 3 weeks in Santa Monica. I start next week so I'll be flying out Tuesday morning and returning Wednesday night. When the R1507 trial gets re-opened, if this treatment isn't working, they'll move me over to it. The R1507 trial is every week so that means even more travel. This is gonna be $$$$$. At least I don't have to pay for the drugs.

His next treatment is April 29th. Please pray for a safe trip! He's still feeling good since the last treatment, please pray this will continue after this treatment!

2008-04-17T22:31:00.000-07:00

Sorry it's taken so long to post an update. I've been waiting on Josh to give me some info to correct. Josh had a great trip to California. The treatment went very well and since then he has been feeling very well. He's gone to work several times this week and has gotten some work done around the house that he's been wanting to do. He also got the opportunity to go to Tucson on Saturday and visit with his friends that are working on his Land Cruiser.

Just an added note: Saturday is Josh's 28th birthday! Happy Birthday Little Brother!

2008-04-07T22:00:00.000-07:00

Just a quick update! Josh leaves tomorrow (4/8) for California. He goes to the clinic to get the treatment and then comes home Wednesday night. Please pray that he will have a safe trip and that everything will go well!

2008-03-31T20:48:00.001-07:00

Josh,
Julie, Grandma, Mom
Parker & Aiden at Grandma's 80th Birthday Party!

Josh and Rosie met with the Dr. in CA today. Josh is able to be part of the study, but it's not the one he had researched before. That one is closed for 2 months. Next week, on Tuesday, Josh will go back out to CA and start the one that they talked about today. I'm getting all this info from Mom and Josh didn't tell her what it's called. What we know about it, is that it's not a shot like we all thought it was going to be. It's a type of chemo. When he gets there they will put the drugs in a pump and then he can go back to the hotel. The next morning he will go back to the clinic for them to remove the pump and then he will get to come home. He will have to go to CA once every 3 weeks. After 6 weeks they will do a scan to see how it's working. If it shows progress they will keep him on it, but I don't know how long they will do that. If it doesn't show progress they will let him start the other one when it opens back up. If he does that one he will have to travel to CA once every week.

Please pray that Josh and Rosie will have a safe flight home tomorrow and that everything will work out with this new treatment!

Results of the scan- Part 2

2008-03-26T20:09:00.000-07:00

I still don't have all the info. but this is all Josh has also. Rosie and Josh are flying out to Santa Monica, CA on Sunday. They will meet with a Dr. on Monday morning to discuss the details of the treatment and find out if he qualifies for it. From Josh's and his Dr.s' understanding it shouldn't be a problem. The only thing that keeps people from being able to do it is if they have high blood sugar. Thankfully Josh's blood sugar is just fine! The shot he's going to get is called IGF-1R Antagonist. From what Josh knows about it, he'll have to get it once every 3 weeks. He's very excited about doing it. A lot of people that have been given this have had great results! They plan on flying home Tuesday morning, but if they need to stay longer they can change their tickets. Please pray for a safe trip, that Josh will be able to get the shot right away, and that the shot(s) work! I will let you know as soon as I find out any other info.

Results of the scan- Part 1

2008-03-25T12:48:00.000-07:00

Mom just called and said Josh called her about the scan results. The scan shows growth so the intense chemo isn't working anymore. He has an appointment on Monday in California to try something new. I'm sorry that's all the details I have right now. When Josh gets home I'll try and get more details and I'll post it as soon as I can! Please pray that what they're going to give him in California will work! Please pray that they will have a safe trip also!

2008-03-21T09:13:00.000-07:00

Well not much to post, but I thought I'd tell you anyways. Josh needed another blood transfusion, so mom took him up on Wednesday for it. His numbers weren't as low as they thought so he only needed one bag of blood. They also did an xray because he was having a lot of pain. They found out he was retaining a lot of fluid but nothing serious. I'll post more after the scan on the 24th! As always, please continue to pray! We really appreciate everyone's prayers and support.

2008-03-16T15:07:00.000-07:00

Grandma and Josh at Grandma's surprise 80th birthday party in March!

Josh's scan and next appt. with the Dr. are scheduled for March 24th. Please pray that we get good results!

Mom took him to Tucson on Thursday for a blood transfusion. His blood count and potassium levels were low again. This weekend he had some swelling, but other than that he's been ok.
Please pray for his wife Rosie! She hasn't been feeling well the last few days.

2008-03-10T20:47:00.001-07:00

Josh finished the latest round of intense chemo on Saturday. I saw him on Sunday and he was having some pain in his side and he was very tired. While he was in Tucson they went ahead and gave him a blood transfusion. Hopefully he won't have to get another one anytime soon! He has an appt. on Wed. so we'll see what the Dr. says next. I will let you know when I find out! Please continue praying. Pray that he'll feel better and that the pain will go away! Pray that his body will recover from the chemo quickly and that he will have more energy, strength, and more of an appetite! Pray that the next scan will give us wonderful results!

2008-03-05T09:27:00.000-08:00

(This is the most recent pic. I have of Josh! This was at Ethan's 2nd b'day party. Josh is in the background with the camcorder and Aiden is pulling on the pinata!)

Josh started the latest round of intense chemo on Monday and has been doing really well with it! When Mom talked to him yesterday he told her he didn't even have to take any of the pain meds. and that he was feeling good. The Dr. said the pains he was having before could've been from gas. I guess the gas was causing the intestines to push on the tumors and that's what he was feeling. I talked to Rosie yesterday and she said the next scan will be 3 weeks after he finishes this round of chemo. Please continue to pray! We're very thankful that he's been able to handle the chemo so well and we hope that continues. Last night he was able to visit with his friends Dave and Angela (they live in Tucson) and this time he's staying with Christy and Paco. (Sorry if I spelled that wrong!)

2008-02-29T06:44:00.000-08:00

OK, OK, OK! I know I haven't updated the blog lately, but there really hasn't been much to tell! :)

The week of Valentine's Day Josh wasn't feeling well! His whole family had been sick! Then on Monday he had a blood transfusion. That raised his counts and he started feeling a little better. He even went to work for a little while and did some work around his house! He's supposed to start the next round of intense chemo this coming Monday. He will do it just like he did last time -outpatient! He's going to ask if he can come home to Sierra Vista during it, but he doubts they'll say yes to that! Please pray that this round will go very well. I think this is the last round of the intense chemo that they will let him do. Shortly after this round is done they will do another scan to see the progress! We're all praying and hoping the scan will give us great news! I will let you know as soon as I know anything else!

Thank you everyone for your continued prayers and support! We all appreciate it so much!

2008-02-06T17:22:00.000-08:00

Josh & Aiden ( a long time ago, look how little Aiden was!)

Josh started his 3rd round of intense of chemo on Monday in Tucson. In the morning he goes to the Cancer Center for about 3 hrs. and then he gets leave and do whatever he wants the rest of the day. He leaves with a pump and still receives the chemo overnight. He's staying at his brother-in-law and sister-in-law's house and should get to come home on Saturday. When I talked to him the other night he said he was feeling fine and was just very happy that he didn't have to be in the hospital.

Please continue to pray that he does well with this round and for the next scan to show that everything is gone!

2008-01-31T16:28:00.000-08:00

Brett and Josh on Christmas night

Josh had his Dr. appt. and CT Scan today! They said the tumors are shrinking and degrading! YEAH!!!!! I guess they can't measure the ones in his liver but when they say they're degrading, that means they're not showing up as bright on the scan. The plan for now is for Josh to start the 3rd round of intense chemo on Monday. He will go to the Cancer Center in the morning and they will get him started and then he gets to go home (home meaning wherever he decides to stay in Tucson) and then come back again in the morning to get it changed out. He will do this for 5 days again, wait a few weeks and then do it over again. After the 4th round they will do another scan and decide where to go from there. They're still talking about the clinical trial. He does have to go to Tucson again tomorrow for a blood transfusion though. He's anemic again. Other than that he's been doing really well. He's been feeling better and has more energy to do things!

Please continue to pray that the chemo will continue to shrink the tumors, that he does well with the outpatient chemo, and that the next scan will show that the cancer is gone!

2008-01-19T07:43:00.001-08:00

Poppa, Omi, Amber
Brett, Josh, Kathy
on Christmas night!

Just a quick update! Josh's blood transfusion went well on Thursday! He's been having a great week! He's had more energy and seems to be eating a little more! He even let me go get him a Cinnabun on Thursday while he was having the transfusion done! He went into work on Wednesday and got in a full days work! He was pretty tired when he got home, but I think he just needed to get out of the house and do something!

I have gotten two emails with info about Relay for Life and that happens here in Sierra Vista. (Thanks for the info Janne and Malea.) It's going to be held May 9th and 10th. If you would like more info on that the website is http://relay.acsevents.org/site/TR/RelayForLife/RelayForLifeGreatWestDivision?fr_id=6229&pg=entry

Please continue to pray for his health and for excellent scan results on the 31st!

2008-01-19T07:43:00.000-08:00

2008-01-15T17:43:00.001-08:00

Dad and Josh on Christmas night!

Today Parker and I took Josh to his Dr.'s appt. in Tucson. All of the prayers are working! The Dr. did a physical exam and said that the tumors have definitely shrunk! Thank the Lord! He will still have a scan to determine how much they've shrunk and to see what's going on, but they're going to have him wait until Jan. 31st to give the latest round of chemo a chance to shrink them even more! Please continue to pray for great scan results! I'm praying the tumors will be completely gone when they do the scan! A friend of mine told me her dad was praying that God will wash away the tumors/cancer just like he washes away our sins! I really liked thinking about it that way, so that's how I pray all the time!

On another positive note- the Dr. said the next round of 5 day chemo can be done as an outpatient if Josh promises to go directly to wherever he's staying in Tucson (he can't go back to Sierra Vista) and stay inside the whole time that he's not having the treatment! He's so excited that he won't be stuck in the hospital! Just the thought of being in the hospital makes him cringe! Just finding out he didn't have to do the scan at the hospital made him happy! (He gets to do the scan at a place right down the street from the Cancer Center and I think the chemo will be done at the Cancer Center!)

One of things that was new info to me, was that he can only do a few more rounds of the 5 day chemo. The Dr. said he would like to keep him from doing more than 4 rounds. The drugs they're using are very dangerous to his other organs and after a certain point they've found out that the drugs don't continue to make things better. I guess the progress just plateaus.

They are trying to get him into the clinical study that he found out about right before the first round of 5 day chemo. His Dr. knows the Dr. that's doing it in L.A. and he thinks he can get him into that study after they're done with the intense chemo. I think it has something to do with giving him some kind of bacteria that liquefies the tumor. ?????? I'll give you more info about it when we find out exactly what it entails.

His blood count today was low so I'll be taking him back to Tucson on Thursday for a blood transfusion.

Today was a GREAT day! Please pray that he continues to have these kinds of days and that things just keep getting better! Please continue to pray for the scan results and his overall health! Today is proof that all of the prayers are working and that God is working on our miracle!

I don't know if everyone can read the comments or not, but our cousins daughter Brittany posted a comment under the Jan. 9th update about a cancer relay being held in Tempe, AZ in April. If you're interested click on the green letters under the post that say comments! If you can't get that to work, please email me and I will forward on the info. For some reason this program won't let me cut and paste what she wrote and I'm way too tired (had to leave my house at 6:30am to get Josh to Tucson on time) to re-type all that she wrote! Thanks Brittany for organizing this! Hopefully you'll have a huge team! Unfortunately the Crowley's won't be able to participate, because I'm not allowed to travel that far in April! It's too close to the baby's due date! But we will definitely be there in spirit. Mom thinks that they do something similar here in Sierra Vista, but she doesn't know when it is!

Thank you all for your continued support and prayers! Keep those prayers coming! Thank the Lord for all the good news we got today!

2008-01-09T18:55:00.001-08:00

Jeff and Josh on Christmas night!

YYYYYEEEEEAAAAAHHHHHHH! Josh is home! They told him this morning he would be able to go home around 6:30pm tonight and he actually got released a few hours early! He looks great and he's very happy to be out of the hospital and home with his family! His next Dr.'s appt. is Jan. 15th and that's when they'll discuss when they're going to schedule the next scan. Please continue to pray for his strength and his overall health! Please pray that when they do the scan that the tumors will be gone! :)

2008-01-09T07:59:00.000-08:00

Josh has been handling the chemo very well this time! Thank the Lord! He's feeling much better than he did with the last round! He's also been doing better about eating and keeping it down. The plan is for him to get released later this evening! Please pray that it works out that way and that they don't keep him waiting there! He's very anxious to get out of there and get home to his family!

I just received a prayer request from one of Mom's really good friends and would like to ask all of you to add them to your prayers and your prayer chains! Her sister has a good friend with a 3yr. old daughter named Kaitlin who just underwent heart surgery. Please pray for her to have a speedy recovery and for her health. Kaitlin's grandmother is also in the hospital battling aggressive ovarian cancer. Please pray for her healing and for the whole family as they are dealing with so much!

2008-01-07T20:07:00.000-08:00

Well not much info for tonight, except that Josh found out he won't get to come home until Wednesday! Needless to say he's not real happy about that, but he kind of knew that's the way it was going to be when they didn't start the chemo until late Friday night instead of in the afternoon when they were supposed to! Please keep praying that things continue to go well!

2008-01-07T08:05:00.001-08:00

Josh and I (and baby) on Christmas night!

Jeff, Parker, and I ( & baby) went to Tucson yesterday and we got to see Josh for a little while! He's looking really good! He looked much better than he did the last time I saw him in the hospital. So far he doesn't have any of the swelling that he normally gets when they give him the IV fluids. He was also able to eat a lot more yesterday and Mom and him did 7 laps around the floor of the hospital. Rosie brought Aiden up to see him and I'm sure that cheered him up to spend time with them. He was supposed to get out on Tues. but Josh is afraid it will be Wednesday since they started the chemo so late on Friday. I think they're supposed to talk to someone about that today, so I will post another update when I find out.

Thank you for your continued prayers and support!

2008-01-05T12:47:00.001-08:00

Rosie, Ethan, and Josh on Christmas night! (Aiden was too busy playing to have his picture taken!)

Josh has started the second round of 5 day chemo!

He went up yesterday and again had to play the waiting game! Late that evening they got him in a double room with a guy who had his TV so loud that Josh couldn't even hear his! Around 11pm they finally got him in a private room and shortly before that they started the chemo.

They want him to try and eat every hour so he can gain some weight. The last time I talked to Mom she said he ate everything he ordered for breakfast, but he was waiting to order anything else because they were supposed to come get him for a chest x-ray.

Yesterday, the Dr. told him his belly wasn't as hard and that could mean the tumors are shrinking and that the last round of chemo did some good! YYYYEEEEEAAAAAHHHHHH! I still haven't heard when the next scan will be to compare the sizes, but I will let you know when I find out. Please pray that we will see BIG results!

Please pray for his strength to fight this and get through the chemo! Please pray that he keeps his spirits up while he's in the hospital! It's always so hard on him to be there!

2007-12-29T08:17:00.000-08:00

Dad, Mom & Josh on Christmas night!

Merry Christmas everyone! We had a wonderful Christmas! Josh seemed to feel better that day than he has lately! It was wonderful for all of us to be together!

Josh was supposed to be admitted yesterday for the second round of 5 day chemo, but they sent him home and rescheduled it for next Friday. When he got out of the hospital the last time, they said he had a touch of pneumonia. I guess they're still waiting for that to clear up before they start the chemo. They did some blood work and his counts are better than they were before, so we can be thankful for that! The other thing is that the Dr. said his belly isn't as distended as it was before, so that could be a good sign that the tumors are shrinking. Josh has also said that the one he could feel, did feel smaller to him. Please pray that the pneumonia will go away and that everything will go as planned next Friday! Please continue to pray for his strength to fight this and win!

Merry Christmas and Happy New Year!

2007-12-20T20:19:00.000-08:00

Josh got home from the hospital early this evening! YYYEEEAAAAHHHH!! They gave him another transfusion before he left and sent him home with a Rx for 2 weeks of oral antibiotics. Sorry this is short but I don't have all the details and I'm just too tired to type out what I do know. I'll try and find out more tomorrow!

2007-12-18T18:14:00.000-08:00

Josh finally got out of the ER and into a private room around 4:30 this evening! He said his room is blue and has a bunch of the characters from Finding Nemo on the walls. He also said there are stickers all over his bed and there's a Mickey Mouse computer in his room! (It doesn't work though! :( ) At least it gives him something interesting to look at and it's a lot better than plain, boring, white walls!

All day they've been giving him blood and IV antibiotics. They'll continue to give him blood until the count is high enough. He's having a hard time eating much because he has painful sores all over his mouth. Mom told me the name of the infection but it was a pretty long name and I can't remember what it was. They say it's an infection that's common for patients to get after chemo, same with the sores in his mouth. There hasn't been anymore talk about when he gets to come home.

Mom spent the day up there with him and will be spending the night at Pam Anderson's house. (Pam is one of her co-workers who lives in Tucson and commutes to Sierra Vista.) Thank you Pam for offering your house! We feel better that she won't be driving home in the dark by herself.

Please continue to pray for a speedy recovery and that he'll be home for Christmas!

2007-12-17T14:27:00.000-08:00

Well here we ago again! Josh is being admitted to the hospital up in Tucson today. He's had a fever all weekend and they told him to come up this morning and get blood drawn to see what's going on. I guess his one (I'm not sure if it's red or white) cell count is really low and they say he's got an infection. They want him to check into the ER right now so they can get IV antibiotics started. They'll move him to a regular room in the hospital when they get one, but at least this way they get the antibiotics started sooner and he's not just sitting around waiting. It sounds like it could be a few days in the hospital to get this cleared up. Please pray that everything works out the way it's supposed to and that he'll be home before Christmas! I'll post more when I know more about what's going on.

2007-12-13T07:20:00.000-08:00

Just a quick update to let you know what's been going on since Josh got out of the hospital. On Monday they got it worked out at the last minute that he wouldn't have to go to Tucson for the shots that they normally give him after the chemo. That was a blessing that they could get it done here and not have to drive all that way just for a 15 min. appt. On Tuesday he went to Tucson to see the oncologist and find out what happens next. As far as I know he will have blood work done on Dec. 27th and be admitted to the hospital on Dec. 28th for another 5 days of intense chemo. There was also some talk about doing an ultrasound to see if there are pockets of fluid that they might be able to drain to give him a little relief. I don't know if that's something they're definitely going to do and if so, when they're talking about doing that! Sorry all 3 boys have been kind of sick and we didn't want to get everyone together and spread everything around! It's hard to hear him on the phone so I try not to keep him on there very long. They've also been very busy because Rosie's brother and his family are visiting for the week!

Yesterday he was supposed to be able to get a blood transfusion here, but Sierra Vista said they had to do another type and cross and that he couldn't get the blood until Friday. They tried all day to get him into Tucson and get it done right away, but that didn't work out either. What they finally got worked out was for Mom and Josh to leave at 5:30 this morning and get it done in Tucson today. I guess it's going to take most of the day. His heart was racing again yesterday and that's one of the main reason they wanted to get it done right away. He also didn't want to get it done on Friday, because the boys are in a little Christmas program at their daycare that he wants to be able to go see!

The next intense chemo MIGHT be in Sierra Vista. Yesterday Josh and Mom talked to one of the Dr.'s here about admitting him to the SV hospital to do the chemo so it wouldn't be so hard on Rosie and the boys. We all have several reservations about this though! The Dr. said there are very few private rooms and he didn't think that they would be able to get him one. Our main concern with that is that Josh cannot be exposed to anyone who is sick. We'd have to worry about the person he was sharing a room with and any of that person's visitors! Please pray that it will all work out the way it's supposed to.

There was some talk about him being able to have it done at home with some home health nurses, but that didn't work out. I didn't get the details as to why it didn't work out though.

Please continue praying for all of us and pray that God will keep him safe during this next round of chemo.

I also have another prayer request I would like to ask everyone to add to their lists. One of Josh's friends from high school has an aunt who is battling ovarian cancer cancer and her son is also battling cancer (sorry I can't remember what type). I can't imagine how much harder it is for mother and son to be going through this at the same time! Their names are Bea and Jerry. Please pray for their strength to fight this and for their family who is helping take care of them!

2007-12-09T20:44:00.000-08:00

HE'S HOME!!!!!! Josh got to come home this evening! I don't know any details about what happens next, except that he's supposed to go back to Tucson tomorrow to get the shot(s) that he normally gets after a dose of chemo. I think it's going to be at least 2, maybe 3, weeks before he has to do it all over again. I will let you know more details when I get them.

I know this sounds like a broken record, but thank you so much for all your prayers. Keep them coming!

2007-12-07T07:56:00.000-08:00

Hi everyone! I really don't have anything new to post. Yesterday Mom said he slept a lot more. They finally got the Dr. to give him something called Diloted (?SP) for the pain, instead of the morphine and he did much better with that! They're also giving him Ativan(SP?) and I guess that's supposed to help with pain and relax him. He did get sick at his stomach yesterday, but Mom thinks it's because they forgot to give him the nausea meds. before he ate. When he ordered his dinner they tried to get the nurse to give it to him to before his food got there, but unfortunately he didn't get it until after his meal came. They told him to wait 15 mins. before eating so it could take affect, but by then he was only able to eat about 3 bites before he fell back asleep! I guess the one good thing is that because he's on chemo he can order his food whenever he wants. Well up until 7:30 pm, but even after that I guess someone is supposed to be able to open the kitchen and make/bring him something simple!

The day that I was there they gave him laysics (SP?) to help with the water retention because the swelling from that was causing him a lot of pain. When I asked Mom about that yesterday she said they won't give him anymore because it doesn't ?mesh? well the chemo. I can't remember exactly how she put it! So his whole body is really swollen from all the fluids they have to give him!

One thing I forgot to mention about the day that I was there, was that one of the nurses who took care of Josh when he was there before (on a different unit) found out he was there again and came to visit him and tell him she was thinking about him!

Thank you again for everything! Please continue to pray! When you call, you don't have to apologize! You're not bugging us! Thank you for the emails also! I'm sorry I don't have time to reply to all of them, but I do read them and appreciate them very much! It's great to know how many people are praying for us!

I would like to add another prayer request to everyone's growing list! My friend Dawn's (we've been friends since pre-school) husband, Jimmy, has something wrong with the way his heart is beating and is going to have to have surgery to fix it. I'm not exactly sure what it's called, but when they made him wear a monitor they said a few times while he was resting, his heart rate went up to 200 beats per min and normal is about 70bpm! Please include their family in your prayers!

Also, some of you know Angie (our sister) and know about her husband Jim's back problems. He had another surgery! Please pray that this will be the last one and that it will fix the problem!

2007-12-05T19:05:00.000-08:00

Hi! Parker and I went to see Josh today, but I don't have anything new to tell you. When we were there he was in a lot of pain. He said his stomach felt like it was about pop and he had a lot of pressure in his abdomen. The nurse came in to give him morphine, but for some reason the Dr. will not listen to Josh and Rosie when they tell him they want him to prescribe something different. Josh gets very sick every time they give him morphine so he's afraid to take it. He did take it though because he was in too much pain to argue and have to wait for something else. Please pray that the Dr. will agree to give him something else that won't make him sick.

Mom and Dad stayed in Tucson last night, but decided to come home tonight. They will be back up there first thing tomorrow morning. Rosie is staying up there at her brother and sister-in-law's house and the boys are here in Sierra Vista with Rosie's parents and her friend Shell (sorry if I spelled that wrong!)

Thank you again for all your prayers, emails, phone calls, etc. Please pray that we get a Christmas miracle and that Josh will be healed!

2007-12-04T18:22:00.000-08:00

Josh's chemo finally got started around 5pm tonight. Other than that I don't have any news. I will probably be going up there tomorrow so I will try to post more info tomorrow night. Please pray that his body will tolerate the chemo and that it will knock out the tumors!

2007-12-03T19:07:00.000-08:00

I don't have much info, but it's 8pm and Josh just called to say that the hospital FINALLY has a room for him! I don't know if they'll start the chemo tonight or wait until tomorrow. I will let you know when I find out more.

Please continue to pray!

2007-12-02T08:00:00.000-08:00

Just a quick note to let everyone know what's going on tomorrow. Josh and Rosie are going to the Cancer Center in the morning. He has to have blood work done to make sure he doesn't have any infections. If that comes back clear then they just have to wait around in Tucson until they tell them they have a bed for him. I don't know if they will start the chemo tomorrow or not. Please pray that his blood work will be ok and that they will be able to get him a room right away. Please pray that they will get him a private room this time!!!!!!

He found out about a clinical study he could take part in in Texas, but he has to be treatment free for 28 days. At the time he spoke to them he had been treatment free for 14 days. The problem is that they don't think he can postpone any treatments that long to be eligible for the study.

Our whole family would like to say thank you for the everyone who has called or come by. We would also like to thank everyone who came to the decorating party yesterday! Several of Josh and Rosie's co-workers and friends came over yesterday and decorated the outside of the house! I will get pictures as soon as I can and post them! It was so thoughtful of you to come over in that nasty weather and make the house look so wonderful!

I will post more info as soon I get it! Please continue to pray!

WE NEED ALL THE PRAYERS WE CAN GET!

2007-11-28T08:49:00.001-08:00

Josh with his bald head!!! I took this picture on Sunday during our Thanksgiving dinner!

I'm not sure exactly how to write this. Josh's Dr. appt. did not go at all how we expected yesterday! The CAT scan results show that the chemo treatments he's been having haven't done any good. The tumors have tripled in size since the last scan. They're telling him that the only option left to fight it, is if he gets admitted to the hospital on Monday and undergoes 5 days of very dangerous chemo. They're telling him that the chemo is so potent that it could kill him! If he chooses not to do it all they can do is make him comfortable. I guess the biggest problems are the tumor in his liver and one in his pelvic area. As of right now, the plan is to check into the hospital on Monday and fight it with everything he's got! He's looking into a place called MD Anderson in Houston, TX. If they can get him in right away and have any different options, he may reconsider and go there depending on what they tell him.

We're all terrified of this next chemo, but we know he's a fighter and he won't give up! Please pray for his strength to fight this! Please pray that God is leading him and the Dr. to do the right thing and that He will get him through this! Please pray for Rosie, for her whole family, and for our whole family! Please ask everyone you know to pray also! We need all the prayers we can get!

Dad was in NC last night. He's picking up a load in TN and then he's on his way home. If anyone needs to get a hold of Mom, please call my house. She stayed with Jeff and I last night and I think she'll be staying with us until Dad gets home.

2007-11-27T09:14:00.000-08:00

Hey! Just a really quick update! Josh got to come home on Saturday! YYYEEEAAAHHHH!! They did some kind of renal test and couldn't find a blockage in the tube from his kidney to his bladder. They also did several blood test because they thought he had an infection. For a while they were afraid it was MRSA. Thank goodness the test came back and said it wasn't. They gave him antibiotics to fight off any other infection, just in case! I don't have all the details and Josh told me he read the blog the other day and said I got some of the things wrong. As soon as he gets a chance, he's going to tell me what's wrong and I will post the corrections.

Today he was supposed to go up to have the CAT Scan done and another round of chemo, but that may have changed. Josh and Rosie are on their way to Tucson now to talk to the Dr. and find out where to go from here. As soon as he gets back and has time, he'll give me the details and I will get them on the blog!

We had our Thanksgiving on Sunday and Josh got his beloved green bean casserole! :) It was nice to have everyone all together and even though it was a few days late, it didn't feel any different!

Please continue to pray for his recovery, his spirit, his strength, and that God will lead the Dr. to the right chemo!

2007-11-22T20:05:00.001-08:00

Happy Thanksgiving!

Unfortunately things didn't go as planned and Josh is still in the hospital up in Tucson. He's still having problems with the colostomy and now it looks like they've found some sort of blockage in the tube that goes from one of his kidney's to his bladder. They were waiting on a urologist to come see him, but since it's Thanksgiving who knows how long that will take. Josh said they mentioned something about maybe having to put a stint in it, but he didn't know anything for sure or any other details.

Please continue to pray! We're really hoping things will start working again and that he'll get to come home tomorrow!

2007-11-21T21:12:00.001-08:00

THANK THE LORD! I just got off the phone with Mom and they are sending Josh home tomorrow! (He could leave tonight, but it's too late and they're so tired that they're just going to stay until the morning.) The CAT scan doesn't show a blockage! They're going to irrigate the colostomy and see if that helps. They didn't say anything else about the CAT scan so we still don't know if the chemo has shrunk any of the tumors or not. Hopefully we'll get that info later.

So ignore the info in the last blog update! I posted it too soon! We are so relieved and thankful for this news! Now we just hope that Josh will actually get to eat tomorrow! :) When I talked to him tonight I was kidding him about ruining Thanksgiving and he said he was so upset because he was craving Mom's green bean casserole! Right now they have him on a liquid diet, but hopefully that will change for tomorrow!

Thanks for the prayers and have a wonderful Thanksgiving!

2007-11-21T18:40:00.001-08:00

Josh has been admitted to UMC tonight! He got home around 11:30 lastnight and then today he was in a lot of pain so the Dr. told him to come up right away. As of right now he's still in the ER in Tucson. They did a CAT scan and they are still waiting for the results, but they think they're might be a blockage. We won't know anything for sure until they get the results and talk to the Dr., but he may end up needing another surgery to remove the tumor that's causing the blockage.

Please pray that this will work out! I'm so worried about him having to have another surgery! It was my understanding that if he had to have surgery while he was going through the chemo that it was very dangerous. That was the reason why he agreed to do the colostomy in the first place. It was also my understanding that trying to remove that tumor was too aggressive of a surgery for him to be able to handle!

Needless to say we are all worried and upset! Please pray for Josh and our whole family! I will post an update as soon as I have any info.

2007-11-20T17:40:00.001-08:00

We need extra prayers tonight! Josh's heart was racing this afternoon so Rosie took him to the ER. They immediately put him in his own room to keep him from getting exposed to anything he could pick up from other patients. It looks like he's anemic again and this is causing his heart rate to speed up. It was up to 120 beats per minute and normal is around 70 bpm. They had it down to 105 bpm while they were waiting for the results of the blood test. They're going to give him 2 units of blood to help with the anemia. Each unit will take 4 hrs. so he will be at the hospital for at least another 8 hrs. They also think he might have an infection- maybe a sinus infection. Please pray that he doesn't have an infection and that they get his heart rate and the anemia under control!

He had his last round of chemo (for this cycle) last Tuesday and on Wednesday Parker and I took him to Tucson for 2 shots. One is supposed to boost his white blood count and the other is for the red blood count. They are trying to work it out with the Cancer Center here in Sierra Vista to give him these shots from now on. They were supposed to do it this time, but they didn't have the shots in time. I like taking him to Tucson because he always wants to go to Olive Garden when he's done, but it's not comfortable for him to have to drive all the way to Tucson for a 15 min. appt. each time! So hopefully it will work out next time to do it here.

He has a scan next week. Please pray that it will show that the tumors are shrinking. He will also start the next cycle of chemo that week.

I know this is repetitive, but I can't say it enough- Thank you all so much for the continued prayers, support, and kind words! We really do appreciate it! Please continue to pray for Josh and our family! Also please pray for all the others that have cancer and for their families! I also have another prayer request that I would like to add to people's prayer chains- my brother-in-law Mike took a contracting job doing medical support for a security detail in Iraq. He left on Friday and we are all very worried for him! It's very hard on the whole family to think of the danger he's in over there. Please pray for him, his wife, their 5 month old daughter, and the rest of our family!

I hope everyone has a wonderful Thanksgiving! This is the perfect time of the year to focus on the positive and to remember and be thankful for all the blessings in our life!

2007-11-09T15:05:00.000-08:00

Josh started the next round of chemo on Tuesday and saw the urologist. The urologist told him what we were all afraid of- the tumor is pressing on his bladder and that's why his bladder function hasn't fully returned since the last surgery. Lately he's really tired and he's having more problems with the nausea. He hasn't been able to eat as much either.

His hair started falling out so he had Rosie shave his head the other night. He was actually looking forward to that part! I guess the boys watched Rosie do it and when she tried to even out Aiden's side burns he wouldn't let her because he was afraid she'd shave it all off like Daddy's!

On Nov. 27th he has an appt. to have a scan done. We're all praying that it will show that the tumors are shrinking! After that the chemo will continue!

Please continue to pray for him and our family!

2007-10-27T09:48:00.000-07:00

1st pic. (from back to front) Jeff, Parker, Gilma. Ethan, Nana, Aiden, & Josh on the hayride to pick pumpkins.
2nd pic.- Parker and Aiden playing with Josh's umbrella

3rd pic. -Josh, Jeff, and Parker pushing our pumpkins back to the tractor.

4th pic.- Josh is sitting behind the boys while the play in a big thing of corn!

Josh had his second chemo treatment on Tuesday. On Wednesday he went back up for a shot that's supposed to boost his immune system. I'm not sure of all the details so I'll post more when I find out more about it. We were told this chemo was really supposed to knock him down, but he's being feeling really good. He's a little tired, but he said Monday was the best day he's had since the last surgery. Last Saturday we all went to the Apple Annie's Pumpkin Patch in Wilcox and Thursday he spent the whole day at the park for a company picnic! We're praying that this energy and strength will continue! He has a week off from the chemo and then will go back for another cycle starting the first full week in November.

Yeah! Started chemo today!

2007-10-16T20:11:00.001-07:00

The Whole Family

Back row (left to right): Rosie, Aiden, Josh, Angie, Jeff, Julie, and Baby ??
Middle Row: Nana and Pop Pop
Front Row: Ethan and Parker

(We took advantage of having Angie here and got everyone together to get some long over due family pictures! I will post more with future updates!)

YEAH!!!!!! Finally some good news! Josh started chemo today! The infection is still there but I guess it looked good enough to go ahead and get the chemo started! We are all so happy! He called me on his way home tonight and he said he felt fine, he was just tired! From what I understand his next chemo will be next Tuesday! Pray that everything continues to go our way. This next chemo is supposed to be the one that really knocks him down so we need to pray for his strength! He went up yesterday to have the port checked. They said it looked fine!

On a sad note, Josh lost his bird Sprocket yesterday! Rosie said they didn't notice anything wrong with him and then she found him dead at the bottom of the cage. Please pray that he will be able to deal with this new grief. It seems like he just keeps getting kicked while he's down! Today is hopefully the day that all of that turns around! Hopefully things will only continue to get better from here on out!

2007-10-14T13:03:00.001-07:00

Josh and Aiden at swimming lessons last year!

Josh's blood transfusion went well, but because he still has an infection in his incision they won"t start the chemo.! AGGGGGGGGGGGGGGHHHHHHHHHHH!!!!!!!!!!!!! They gave him another Rx to treat the infection, but we don't know how long it will take to get rid of it. As of this morning he said it was still "oozing". On Friday I took him up to see the urologist and have the port put in. He's still having problems with being able to void on his own. When he saw this urologist he just gave him more catheters and scheduled him for some kind of test. I think that's in several weeks! He didn't even really tell him much about the test except that it will take an hour! The port was done through outpatient surgery and went really well. He's a little sore, but doesn't have any real complaints about it. After they did that we went to Olive Garden for lunch and he was able to eat a bowl of soup and his whole meal! I thought that was a good sign! Nothing like Olive Garden to fatten you up! He's supposed to go back up on Monday for them to check the port and then again on Tuesday to see the oncologist and HOPEFULLY start chemo! Please pray that the infection will clear up by then and that they won't have to put the chemo off any longer!

On a positive note: Our half-sister Angie is here from FL to visit for the week! I picked her up yesterday and will take her back on Friday! We haven't seen her since Jeff and I got married 5 yrs ago! We're going to try and get a whole family picture done while she's here! This is the first time she's met the boys and it will be nice for us to all get to spend some time together! Dad will be home in a few hours, so he'll get to see her also! Special thanks to Angie's family for giving her the money for the plane tickets and the time off from work! It's really nice to see her again after all these years!

Well that's it for now! Please continue to pray for the infection to go away, for Josh's strength to fight this, and for God to completely heal him!

2007-10-09T20:57:00.001-07:00

Josh, Aiden & Rosie
(These were taken on their trip to Europe. They went over to visit Rosie's parents when they lived there.)

Josh just called on his way home from seeing the Dr. in Tucson. He was supposed to start chemo today, but like we expected they wouldn't let him because of the infection. They also found out he's still anemic and his potassium level is too low. They did a culture of the infection in his incision to find out if the antibiotics he's on will get rid of it or if there's something else he should be taking for it. Tomorrow he goes back up to have a blood transfusion to help with the anemia. He was supposed to meet with the pain Dr., but is going to have to cancel it because the transfusion is supposed to take anywhere from 5-7 hrs. On Thurs. he will meet with the oncologist and surgeon. They will do some more blood work to see what is the count is. If it's good he will start chemo that afternoon. On Friday he will have outpatient surgery to put in a port. The port will allow them to give the chemo, draw blood, give IV medicines, etc. Basically they won't have to poke him with needles for everything! If he starts the chemo this Thursday he will have the second dose the following Thursday. Then the Thursday after that he gets something else and I can't remember for sure what it is, but I think it's blood cells or more blood- something like that and then the chemo starts all over again. He said it's a 21 day cycle. I hope I have all of that right! When he told me that part I was in the car driving and couldn't write it down. He said the second dose of the chemo is supposed to be the worst. I guess it's usually the dose that really knocks people down. Please pray for his strength (mental, spiritual, and physical) to get through all of this! I know I say this all the time but- Thank you all so much for your continued prayers and support! It really means a lot to all of us! We know God is going to answer all of these prayers! We just have to stay strong and keep the faith!

2007-10-06T17:40:00.000-07:00

Aiden and Josh reading a bedtime story!

Josh had a bit of a set back today! This morning he went to Urgent Care here in Sierra Vista because he was afraid that the incision was infected. He was right. They sent him home with a prescription for antibiotics. Pray that the antibiotics will clear up the infection without any problems. We got a prayer request answered though and his bowels are finally moving! YEAH! Please pray that the other will start working better and that he'll be able to get rid of the catheter within the next couple of days. He's supposed to start chemo on the 9th so pray that he's healed enough to do that and that the infection doesn't cause a delay. He also has an appt. with a pain management Dr. on the 10th. I guess the pains aren't all that bad right now, but his Dr. recommended that he get in with this Dr. just in case because it would be easier to get in later if he was already his patient!

He's out of the hospital!

2007-10-05T07:35:00.000-07:00

Josh & Ethan

Josh, Ethan, & Dad

Thank you for your prayers! Josh is home! Yesterday they told him he could go home when he could void on his own. They waited all day and he wasn't able to so they sent him late last night with a catheter and taught him how to do it himself. Please pray that he will be able to get rid of the catheter very soon! As of right now that's all the new info. Please pray that he will heal quickly and that they will still be able to start the chemo on 10/9.

2007-10-01T20:38:00.000-07:00

Josh and Ethan at the park

Mom and I spent the day in Tucson with Josh and Rosie at the hospital. Today was another bad day when it came to pain management! They finally came in and just removed the epidural and started over again. After they put the new one in he felt much better! He had a fever of 101 all day and he wouldn't listen to the nurse about doing the inspirometer (not sure how it's spelled- it's the breathing thing he's supposed to do). But he got up twice and went for a walk. He also sat in the chair for a little while. There still isn't any news on when he'll get to come home. I guess it depends on his pain and when his bowels start moving again. Mom will be going up again tomorrow and I will let you know if she has any news! Please continue to pray for a quick recovery and that he won't let this bring him down!

2007-09-30T22:07:00.000-07:00

Josh and Aiden playing with light sabers! They both LOVE Star Wars!

We got back from CO this evening and stopped at the hospital to see Josh and pick Mom up. The surgery went as planned and he now has the colostomy bag. The Dr. wasn't able to remove any of the tumor. (I don't have any details as to why not though!)It sounds like he's still on schedule for starting the chemo on 10/9/07. I guess today was a rough day because they were having problems with his pain medicine pump and his epidural. Mom said they spent most of the day trying to get the things to work. They finally got the anesthesiologist to come down and he/she got it fixed. While we were there he was really drowsy, but we got to talk to him some. From what I understand Rosie took Aiden back to Sierra Vista, but she was going back up and spending the night at her brother and sister-in-law's house so she could go see him first thing tomorrow. Mom and I are going up tomorrow morning. The first day Josh was in the hospital he got to see the boys. Fortunately we knew one of the nurses and she was able to get Aiden and Ethan in. He got moved to another floor today and they allow kids over 2 yrs. to go into the rooms, but they said they would let Ethan in anyways since he's his son. We took Parker in to see him tonight. I'm sorry I don't have much info. but I will let you know as soon as I do.

Change of Plans- SURGERY TODAY!

2007-09-29T09:07:00.000-07:00

Just a quick update! Mom called me in CO lastnight and said that Josh was being admitted to the hospital. He's having too much pain/pressure so they're going to do the surgery this morning insead of Monday. I talked to her a little while ago and she said the surgery was scheduled for 9:30am today, but it just got pushed back to 10:00am because there were 5 shootings in Tucson lastnight! Rosie, Mom, and Kathy are all in Tucson with him. He is going to have the colostomy done, but while the Dr.'s in there he's going to look at the tumor and see if he can remove any of it. He told Rosie that he didn't think he was going to be able to though. We have the wedding this afternoon/evening, but I will post an update as soon as we get home and I get more info. They haven't told Mom or Rosie how the long the surgery will take, so I might have news before we leave. PLEASE keep Josh, our family, and the Dr.'s in your prayers!

2007-09-26T08:01:00.000-07:00

Omi and Josh (Sept. 15th, 2007)

MORE PRAYERS PLEASE!

Josh and Mom went to Tuscon to see the Dr. at UMC yesterday and didn't get the news we were all hoping for. I'm not sure I have all the details correct but here is what's going on. The Dr. said the CAT scan shows that the tumor the Dr. in KS didn't take out is pressing on him in a not so pleasant place and he's afraid it will grow into his intestines and cause a blockage. He said that if a blockage occurs during the chemo, that they would have to do an emergency surgery and it could be very dangerous! The Dr. wants to go in and give Josh a colostomy bag and then start chemo on Oct. 9th. (for those of you who don't know what a colostomy bag is here is the definition from Wikipedia. A colostomy is a surgical procedure that involves connecting a part of the colon onto the anterior abdominal wall, leaving the patient with an opening on the abdomen called a stoma. This opening is formed from the end of the large intestine is drawn out through the incision and sutured to the skin. After a colostomy, feces leave the patient's body through the stoma, and collect in a pouch attached to the patient's abdomen which is changed when necessary.)

The other option is to go in for another surgery to remove the tumor. The problem with that is it will delay him starting the chemo because they will have to wait for him to recovery from that surgery to be strong enough for the chemo. The Dr. doesn't want to put off the chemo any longer so he is suggesting that the colostomy is the best way to go. Josh is just starting to feel normal again after the first surgery and of course does not want any more surgeries! Either the colostomy or the removal! The Dr. wants to do this as early as this Thursday or the following Monday! Please pray that God will build Josh back up and give him the faith that he is taking care of things! Please pray that Josh won't let this bring him down and that he will have the continued strength to fight this. It was so heartbreaking for all of us to get that news yesterday, but it really tore Josh down! Please pray that God is leading the Dr. in the right direction and that this really is what needs to be done!

Right now it sounds like Josh is leaning toward the colostomy even though he of course would rather not! At least this time he won't be so far away and we can all go up to Tucson to be with him!

Jeff, Parker and I are leaving for CO tomorrow for Lisa's wedding. I will do my best to update the blog from there if I get any new information. We will be back on Sunday.

Please continue to pray for him and our family! I would also like to add a girl named Maggie to the pray list. She is a 16 yr. old girl in Tucson who has the same thing. Her mom and I have been emailing each other and she has given me some very helpful information.

It amazes me how many people we have all over the world praying for us! The other day I was in Walmart and I was talking to a lady who works there. She knows Rosie's mom and asked me how things were going. I was telling her about Josh when another lady who worked there overheard me and asked if I was talking about Josh! I told her yes, and she said her church was praying for him but she didn't know who he was. It's so wonderful to know how the prayer request has spread and to know that they're are so many people who are taking the time to pray for somebody that they don't even know! Prayer does work and we have to keep that faith that God will make him better!

PS. I don't know what's going on with text size. Sorry I can't get it all the same size!

2007-09-19T18:11:00.000-07:00

These pictures were taken at both of Aiden's birthday parties. The first picture is on his actual birthday and the second one was taken the day of the big party!

I'm sorry I've been so bad about getting updates posted! It just seems like there's never enough time in the day to get everything done. Now that school has started back I've been subbing and tutoring twice a week and by the time I get home I'm ready to collapse!

Since the last post- Josh is still recovering from the surgery but seems to be doing better and getting stronger everyday! Last Tuesday Mom and Dad took him to Tucson to get some blood work done and see Dr. Cranmer at UMC. He was feeling very lightheaded and they were concerned. The blood work came back ok, except that it showed he's anemic. The Dr. said he's got to eat more and gain some weight! He put him on an ice cream diet. (Now that's a diet I could easily stick to!) He wants him to eat lots of ice cream and drink lots of shakes. He was having a hard time eating anything because everything tasted funny to him and certain foods just bothered him. The Dr. said that cold stuff might go down easier and taste a little better. He also told him not to waste his money on Ensure and Boost. He told him to get the Carnation Instant Breakfast drink mixes. During that visit he also got his staples removed. (Side story about that- A few days before this Josh showed Parker and Aiden his stomach with the staples in it! Parker's eyes almost came out of his head. He just kind of looked at him in disbelief! I told him it was ok and that Uncle Joshy just had a boo-boo. That night when I was putting him to bed we finished his devotional and then started to pray. We always pray for Josh, but that night Parker made sure he mentioned "Joshy's boo-boo"! He prays for it every night now!) Anyways- back to the Dr.'s visit. He still doesn't know when he'll start chemo because they want to make sure he's completely healed and his body is stronger. It might be another 2 weeks. Josh (and the rest of us) are very anxious to get it going! I guess he's also found a Dr. in Texas he may want to go see! I don't know a whole lot about that, but I will let you know when we do.

Yesterday (9/18) Mom took Josh to Tucson for a CAT Scan. He has another appt. with Dr. Cranmer on the 9/25 to discuss chemo/treatments. I don't know if that's when they'll find out the results of the CAT Scan or not.

He's gone into work a few times. One time was just to say hi to everyone and the last few times he's worked a few hours and then come home to rest. His job has been wonderful about his time off and he can also do some things from home. Well I think that's all for now!

He's home!

2007-09-08T20:09:00.000-07:00

Josh and Ethan

We just got back from seeing Josh! He's so happy to be home and back with his whole family! It was so great to be able to see him and hug him! The flight home and the car ride home went well! He's still has the swelling and his back and legs are really bothering him. It seemed to help when we were massaging his legs, but then his back really started bothering him so he got up and walked around the house for a little while. After that Mom got out the massager for his back and that seemed to help. He also doesn't have much of an appetite. He's says everything taste funny. Tomorrow we will all be over there again for Aiden's birthday. Hopefully it won't be too much for him! Please pray that he will have a speedy recovery and that the pain will go away and he can be comfortable again. Please continue to pray for the miracle we need!

He's out of the hospital!

2007-09-07T15:02:00.000-07:00

Josh and Aiden at Golf & Stuff

Just wanted to let everybody know that Josh was released from the hospital this morning! He will be flying home with Rosie tomorrow and they will be home late in the afternoon! I asked him what the other Dr.'s said about his case when it was presented to the group and he said they didn't really tell him anything. I guess they're still trying to figure out what will work best from him. When he recovers from the surgery he will start chemo in Tucson at the UMC Cancer Center.

Please continue to pray that they will find the right treatment for him and that they will have a safe flight home!

COMING HOME!!!!

2007-09-06T08:24:00.000-07:00

Super Baby (Ethan) & Josh

THANK YOU JESUS! ONE PRAYER ANSWERED AND MORE TO COME! I just got off the phone with Mom. Josh just called her and told me not to buy the plane ticket for Kansas because he's getting released tomorrow or Saturday!!!!!!! They're going to present his case tomorrow and that's when they'll make the final decision. His doctor said he might even be able to fly right away if he promises that he'll get up and walk during the flight! If not I guess they're just going to rent a vehicle and drive home. We don't have all the details yet, but we're so excited!

The fever went away yesterday! Thank goodness! He still has the swelling but it looks like they may give him medicine to treat it at home. He's been up and moving around- even climbed a flight of stairs and I guess Rosie's been allowed to bring him regular food! He's having a hard time with the breathing thing but I'm sure that will get better soon. (I don't know what it's called but it's like what Dad had do after his lungs collapsed! It's a plastic tube kind of thing with a ball in it and he has to take a deep breath into it (as deep as he can) to get the ball to go up to the top.) They also took out a lot of the tubes yesterday and this morning.

Please pray that all of this will work out perfectly for him to come home, that they will have a safe and comfortable trip, and that the swelling will go down quickly! He's so excited to get home and see the boys! Please continue to pray for the miracle we need to make him healthy again! I know I say this every time, but we can't thank you enough for your continued prayers and support! We wouldn't be able to get through this without you!

Hopefully I will have more wonderful news to post tonight or tomorrow! We're so just so excited today! We really needed this good news!

Sept. 4th, 2007

2007-09-04T20:59:00.000-07:00

Josh and Aiden playing video games!

Last night Josh got moved out of ICU and is now in a regular private room. He’s in room #5101. The cards I sent on Friday (that had the second room # on them) got there today. That was a lot faster than I had expected, especially for a holiday weekend. Now that he’s in a regular room we’re able to talk to him. I think that really made Mom feel better last night. She hasn’t been able to hear his voice for so long now and I think it was really getting to her. I talked to him twice today and he sounds good, but he’s really missing the boys! He did get to see them on the web cam today though. He hasn’t been able to see them or talk to them since the surgery.

His bowels just started moving, so yesterday he got to take a couple sips of broth. But he said it tasted horrible and made him feel kind of sick. This morning was the first time he really got to eat anything. I couldn’t hear him when he told me what he ate for breakfast but he had a turkey sandwich for lunch. He’s been wanting a calzone since right before the surgery, so hopefully he’ll get to eat one soon! He’s only allowed a very limited amount of liquids because of the swelling. The medicine they’re giving him for that is working, but it’s very slow. Unfortunately it sounds like that might extend the amount of time he has to stay in the hospital. Pray that the swelling will go away quickly and that he will be able to come home very soon!

The Dr. asked them for his x-rays the other day and either tomorrow or Thursday (Mom and I heard two different days) he’s going to get together with other Dr.’s and discuss Josh’s case! Pray that they will come up with a better plan for his treatment or another procedure that will work better. The surgeon came in this evening on his rounds and said that he had a low-grade fever. Josh said it wasn’t anything to be worried about and that they were just going to watch it. I thought that was a sign of infection and when I asked him about that he said it was ok. I asked him if he just wasn’t telling me everything because he knew we’d worry and he promised me he wasn’t! Please pray that the fever goes away and that he doesn’t get an infection!

Dad left today. He’s got a load in Omaha and then in Aurora, CO and then he’ll be home. He’s going to pick Mom up and then they’ll drive back out to Kansas. Mom thinks it will be Friday, but it just depends on how quickly he can get the loads and drop them off. When Mom gets there, I’ll fly out and meet her in KS. I don’t know how long we’ll be there. It just depends on when Josh gets released. I talked to him today about how he wants to get home and he really doesn’t seem to care either way. If he ends up having to stay in the hospital long enough, he may just fly home. I found a local RV rental today and the prices are great compared to all the ones I was finding online. The only problem is that they only have 2 and I can’t reserve it because I don’t know what dates we need it for yet! I also found out today that Rosie’s friend Shell has a friend who has an RV that they might be willing to let us borrow. I would like to thank everyone who is offering to help us in every way possible. Right now we don’t know what our needs are going to be until we know more about what’s going on with him getting released. We really appreciate the offers and we will let you know what we’re going to do as soon we know. If I do go to KS I will definitely need to take people up on the offers to watch Parker while Jeff is at work!

Well that’s all the info I have for tonight. I’ll post more when I have more! Thank you again for all your prayers and support. Please continue to pray for a miracle for Josh and everyone else that is going through the same thing!

Patty- Could you please email me your email address? My email is julie_crowley@hotmail.com

September 1st, 2007

2007-09-01T19:10:00.001-07:00

Josh & Aiden (Sept. 2004)

Josh & Ethan (Feb. 2006)

Hi! I know all of you have been checking for updates on Josh’s surgery and I’m so sorry that it’s taken this long to get it up here! The surgery was Thursday morning and ever since then the information we’ve been getting is in bits and pieces and I’m having a hard sitting down and figuring out how to write it all up.!

They were able to remove 75% (30 lbs.) of the tumors and they immediately started the hypothermic and IV chemo. Unfortunately it has spread to his liver. When they asked the Dr. about a liver transplant they were told it wouldn’t work because it was at the blood supply. We have to hope and pray that the chemo will shrink the tumors that they weren’t able to remove. Josh’s Dr. has sent samples to a lab to do more research on and they have put him on a list to try a new investigational drug. He is recovering in ICU and was doing very well breathing on his own so he didn’t need to be on a ventilator. Yesterday they removed his drainage tube and they gave him some insulin because his blood sugar was low. Today his blood sugar was ok. They still won’t let him eat because his bowels aren’t moving yet and they’re afraid of him getting sick and pulling his stitches. Right now the IV fluids they’re giving him to hydrate him aren’t going where there supposed to (into his bloodstream) it went into his body cavity and it’s making his lower body swell. They’re giving him medicine to get the fluids out and help his blood stream absorb it instead.

He should be able to come home in 10-15 days and then he will continue the IV chemo at UMC in Tucson. Rosie was going to call that Dr. yesterday, but I haven’t heard what she found out. We are still debating on how we are going to get him home. The Dr. told him he couldn’t fly for 3 weeks after the surgery, so we are trying to figure out the best and most comfortable way to get him back here. The Dr. says it shouldn’t be a problem for him to come back in Dad’s semi, but a lot of us are concerned about him having to get up into the truck. Mom and Jeff are talking about driving out next weekend either in Grandma’s van or a rented RV. Another option is that Dad is trying to get a load home so he can drop off the truck and he and mom and can drive out there together and get him. Dad is also looking into a Greyhound bus that has been converted into something like an RV that is used to get truck drivers home if they get sick while they are on the road. Right now we’re just trying to figure out what our options are! We can’t make any real decisions until we know more about when Josh is getting released and how he’s going to feel!

THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!
On behalf of my entire family, I would like to thank the staff at Town and Country Elementary School (where Mom works) for such a wonderfully generous donation to help us with expenses! We cannot tell you enough how much we appreciate it and how overwhelmed we are with your generosity! We have not decided exactly how to use it but we think it will go towards getting Josh home! Thank you also for your kind words and prayers!

Although we didn’t get the results we were hoping for, we’re still praying for a miracle. Please pray that the chemo will shrink the tumors and that he will get to come home very soon!

August 29th, 2007

2007-08-29T20:33:00.000-07:00

Here is a picture taken last October at Apple Annie's. Josh's family and mine spent the day there picking out our pumpkins for Halloween and eating lunch at the apple orchard.

Dad got to Kansas City yesterday and Josh arranged for him to stay at Hope House. It's a place where patients and their families can stay for free! Josh was admitted to the hospital today so they could get him hydrated and start "cleaning out" his bowels. The surgery is supposed to start around 7:30 a.m (Kansas time)/ 5:30a.m. (Arizona time). Josh told me yesterday that he thinks his Dr. will come out and update Dad, Rosie, and Shell when he takes breaks during the surgery. As soon as I hear anything, I will try to get it posted as soon as I can.

Please continue to pray for Josh, but also, please pray that God will guide the Dr.'s eyes and hands! I know it's going to be hard and that they most likely won't be able to get all of the !@#% (sorry- I just don't like using the "C" word!) out of him, but I'm praying that God will help them get every little bit out that they can! Please pray for our whole family as we sit anxiously praying and waiting for good news!

For everybody that wants to send cards, the address is below in the Aug. 27th post. The person that I talked to at the hospital said we have to put a room number on there. Even though it will probably change a couple of times she said if we at least have one of the room #'s on there, they will be able to find him. Right now he's in room #5116. After the surgery he will be in an ICU room and I will post that room # as soon as I get it. I'm going to go ahead and send at least one of my cards tomorrow with this room # on it.

Thank you to the people who have left comments:
Patty (Nathan's Mom)- Thank you for talking to Josh and sharing your stories with him! He told me about you and some of the things you told him. I think it made him feel better and a little more confident in going with this type of treatment! I will be praying for your son!
Tracy (Raymond's Mom)- Thank you for your comments and that website. I haven't done a lot of research on this because the stuff that I did read-I didn't like! All I know is that my brother is going to beat the odds that they give on those sites and I don't want to hear anymore of it! I did go to the website to see your son's page and the home page. It was WONDERFUL to read all the stories of the people who have been in remission and have beat this horrible thing! I like the way everyone on there is giving everyone the details on their treatments and what worked for them, and their Dr.'s contact info. I will be praying for your son also!

I would like to ask everyone that is praying for Josh to also add Nathan and Raymond to your prayers and ask your friends and family to do the same! We can never have enough people praying! WE ARE GOING TO GET THE MIRACLE WE ARE ASKING FOR! WE HAVE TO STAY POSITIVE AND BELIEVE THAT GOD WILL ANSWER THESE PRAYERS!

I hope Josh and Rosie don't mind the pictures I'm putting up, but I wanted everybody to see who they're praying for and these pictures at least brighten up such dreary information!

August 29th, 2007

2007-08-29T07:28:00.000-07:00

Here is another family picture! This was taken Christmas 2006!

Hopefully Josh and Rosie won't mind, but since some of you have never met my brother and his family, I would like to show you who you are praying for!

August 27th, 2007

2007-08-27T17:42:00.001-07:00

I talked to Josh today and got some more details. He will be admitted on Wed. morning to get IV fluids and for a bowel prep. (He has to have his bowels cleaned out before the surgery.) Then they will do the surgery first thing Thursday morning. I was wrong in the last posting- the surgery will probably take about 15hrs. and it's being done by a team of surgeons. The Dr. thinks that the cancer might be on his liver now, so they will most likely have to remove parts of his liver. He's also concerned that it could be in or on his bowels, so he may have to remove parts of that or "scoop" it out of there. The Dr. won't know any of this for sure until he gets in there and can see it better. Right now he can't even tell Josh how much of the tumors he's going to be able to remove. Josh said the Dr. told him that he would remove the peritoneum lining and the tumors that were stuck to that would come with it. They will start him on IV chemo and the Hyperthermic Intraperitoneal Chemotherapy right after the surgery. He's guessing that he will be in the hospital for 2 weeks after the surgery and then he won't be able to fly home for another week after that. Josh thinks that Dad can just bring him home in the semi, but I think that would be too hard for him to get in and out of and I think it would be an awfully bumpy ride. He just said we'd figure it out when we got closer to the time.

I called and got the address for the hospital, but they said I have to have a room number to send it to. The address is :
University of Kansas Medical Center
3901 Rainbow Blvd.
Kansas City, KS 66160
(913)588-5000
Even though his room numbers will change they said I have to have a room # to start with. On Wed. I will call again and see if the first room he's in before the surgery will work and then I will put it on the blog.

When I talked to him today he sounded good. He went to a chiropractor and sat in the hot tub at the hotel for awhile and that seemed to help the pain a little. He was able to eat a little more today, but he's still not eating or drinking enough and that's another reason they want to admit him on Wed.

Well that's all the info I have for today. When I get more I will post it!

PLEASE CONTINUE TO PRAY FOR HIM, HIS DOCTORS, & OUR WHOLE FAMILY!!!!!!!!!

August 26th, 2007

2007-08-26T17:42:00.000-07:00

Hi everyone! My cousin Lynn gave me the idea to start a blog and that way I wouldn't have to worry about only being able to email 50 people with the hotmail limitations. If it's easier for you to get the email than it is to check out the blog email me and let me know and I will continue to email the updates to you! I have to do it anyways for some of Mom's older friends that really only know how to check their emails or have very limited access to the web, so it's not a problem! I haven't done this before so bear with me! Hopefully I have this thing figured out! Below is the email I sent out last night. I will add more every time I get more/ new information.

Thank you Lynn for the great idea!

Julie

August 25th, 2007

2007-08-26T17:18:00.000-07:00

Hi everyone! Josh flew to Kansas City, KS on Thursday and met with the Dr. yesterday. The surgery and the start of the Hyperthermic Intraperitoneal Chemotherapy will be Thursday, Aug. 30th. I hope I have this right, but I think Mom said they were also going to be giving him some other type of IV chemo at the same time! He was originally told the surgery would be Mon. or Tues, but I guess the Dr.'s surgery schedule was full those 2 days. Rosie and her best friend are out there with him. As far as I know they will be staying until the beginning of Sept. Dad is home today and will leave tomorrow afternoon. He has a couple of loads to drop off and his final drop is about 200 miles away from where Josh is. After that drop he's going to take some time and go be with Josh. We're not exactly sure what's going to happen after that. The Dr. wasn't able to tell him exactly when he'd be ready to come home. The only thing he did tell him was that he couldn't fly until 3 weeks after the surgery. As of right now, Mom and Dad are talking about borrowing Grandma's van and driving out there to get him. The van's back seat can fold down into a bed so they think that would be the most comfortable thing for Josh for such a long drive!

Frank and Gilma (Rosie's parents). Mom, and I are taking care of the boys. Gilma is staying at Josh's house to take care of the boys, and when Frank leaves on TDY, Mom will also be staying there! They are trying to keep things as normal as possible for them. They set up a web cam the other night so Josh and Rosie could see them. Josh has also done some very special things for the boys to help put them to bed every night! He's such an amazing daddy!

Thank you again for all your continued prayers and kind words! We all really appreciate it and we know that God is taking care of everything! Please continue to pray for Josh, our family and the Dr.'s and nurses that will be taking care of him! Pray that God will guide the Dr. and will show him everywhere the tumors are so he can get them all out! It sounds like it's going to be about a 7hr. surgery.

I will let you know as soon as I find out anything else. I'm also going to try and get an address where we can send cards. As soon as I get that I will email that in case anybody would like it.

Love,
Julie

PS. I know some of you have asked me to add people to the email list. If you do not see the addresses above, please forward it on for me. Hotmail will only let me send one email to 50 people at a time. If you're getting this email twice I'm sorry. Mom has asked me to email each email I write to her so that she doesn't have to type up one for everyone on her list. Some of you are on both of the lists!