Bracelets

Hey everyone, I just wanted to give you some information on my bracelet making. I have decided to take down the bracelet page. Making all of the bracelets has been taxing on me and I have decided to make them on a special order basis only. So, you can still get a bracelet, and you an still get a bracelet fixed, but you will have to email me directly. I really appreciate all of the bracelet orders, as the money and moral support has been a great help. With the assistance of Crystal and Gretchen, hundreds of bracelets are out in the world spreading cancer awareness.

Thanks again!

Diagnosis

Since Josh’s passing, we have learned a lot about his cancer. This new information comes from a partial autopsy that we ordered to be performed on his abdomen. We did this because we all still have some many questions and we wanted to make sure that the doctors learned from Josh’s situation.
About a month ago we received the preliminary results and just yesterday we got the full report. Much to our surprise, the preliminary report stated that Josh did NOT have appendix cancer (as we previously thought). Instead, what he had was a gastric cancer (originating in the stomach). The type of cancer is referred to as linitus plastica.
At first we were definitely shocked and we went through a range of emotions. We have since done more research and we are more accepting of this new diagnosis. I won’t go into details about everything concerning this cancer. If you want to learn more, please feel free to do a search on the internet, or to email me. Basically, what I can say is that Josh lived longer than he ever should have. I believe that if we had known the true diagnosis, he probably would not have lived as long as he did. He fought harder than we even realized, and he surprised a lot of doctors.

I think the main reason that he was misdiagnosed was the cancer cells themselves. By the time they were looked at under a microscope, they had morphed so much that they were unrecognizable. The actual type of cell is still the same, it is still an adenocarcinoma with signet ring cells. What has changed is the origin.

As most of you know, I had my appendix removed this summer following testing because of Josh’s situation. I don’t mind that it might have been “for nothing”, I didn’t need that darn appendix anyway. So, as you can imagine, the testing now changes completely. I have already undergone an endoscopy
To look in my stomach for abnormalities. Everything looked fine, but it turns out that I do have a bacterial infection, so I am on antibiotics to eradicate that. I will probably undergo a few more tests along with being closely monitored in the future for any sort of stomach problems. Crystal will also go through the testing. A lot of things can increase a person’s risk factors for stomach cancer, and that is something that we are not taking lightly.

I would be happy to answer anyone’s questions regarding this new information, so please feel free to email me. Gretchen and I have done a lot of research and that will continue. Also, if anyone out there has had experience with this cancer, please let us know. We would love to hear your story.

Pancake Breakfast

Thank you to all of you who joined us at the breakfast, and who helped to put the event together!! Nicole and Henry Scoles along Sherrie Ketchem got the wonderful breakfast started and we all worked together to carry out the plans. We had over 120 people out there including the U of A Men's rugby team (thanks Coach Sitton).

The pancakes were excellent thanks to Josh's recipe and the hard work of the kitchen staff. We sold lots of raffle tickets and gave away some great prizes. We know that Josh was watching down on us that cloudy day.

For all of you who couldn't make it this year, we plan on seeing you for the next pancake breakfast. We hope to keep this even going annually in order to gather family and friends in Josh's memory and to raise money for cancer fighters!

Please don't forget about the Climb to Conquer Cancer on March 12, 2005! I will post more details in early January, but email me if you would like more information sooner. Also let me know if you are interested is starting a team for your workplace or church, etc...

Pancake Breakfast

Please check out the link to the Pancake Breakfast for details!

www.giantallen.com/pancake

Fund Update

Hey everyone, I wanted to let you know that I was one digit off on the PO Box for the Education fund! oops! So sorry!
Here is the correct address:

To donate directly to the Jake and Caily college fund, you may write a check to

Josh Allen Education Fund
c/o AZ Rugby
PO Box 42287
Tucson, AZ 85733

Thanks!

Don't forget, Pancake breakfast this Saturday!!!!

Stories

I know many of you have great stories of times you spent with Josh. We would really appreciate if you would share those stories with us. I would like to compile these stories for the kids to be able to read in the future (and we would love to read them, too). This will be a great way for the kids to understand who Josh is. The story can be funny, sad, happy....whatever! Please share!

You may send the story to me at marisaallen@hotmail.com and I will make sure that they are properly shared.

Thanks!

update and more

Hi everyone, sorry it has taken so long to update. It has been difficult for me because I want so badly to simply update you on Josh’s battle. We are all dealing with our loss as best as we can, although it is difficult. Luckily we have the kids to hold us all together.

Thank you all so much for your support. The services were beautiful and it was wonderful to see hundreds of you there. We also appreciate those who have donated to the funds. For those donating to the Team Giant Fund directly, please write your name on the deposit slip so that we can see who has donated. You could also send us a note or email to let us know. Please know that we are all very thankful.

I want to let you know that I plan to keep-up with this website. Updates probably won’t be quite as frequent, but please check back when you can. We have a lot ahead of us in this battle against cancer. The pancake breakfast is coming up Saturday, Nov. 6. Please join us. If you would like to purchase tickets you can email, or call Sherrie Ketchum (fantazmik@earthlink.net 404-7966), or to give a donation (a grocery gift card, or a bag of pancake mix would be great!) call Nicole Scoles (nicole@cpuman.net 907-0220).

We are also planning on climbing “A” mountain to conquer cancer on Saturday, March 12 2005. I’ll give more details on this later, but please mark your calendars!

Education Fund

I want to say a quick "thank you" to all of you who were here today (both physically and spiritually). It means a lot to us to see the many people that Josh has affected. I'm heading off to bed, but I wanted to post the information about the education fund, and then I will write more at a later date.

To donate directly to the Jake and Caily college fund, you may write a check to

Josh Allen Education Fund
c/o AZ Rugby
PO Box 42287
Tucson, AZ 85733


We are also still accepting donations to Team Giant Fund (Bank One: 661644807 ****the bank account # from Wednesday's obituary was incorrect)
and also to the American Cancer Society of Tucson in the name of Team Giant.

Services

Hi everyone, I want to let you know that we are all dealing as well as we can. We are keeping busy preparing everything for the services. We look forward to the celebration fo Josh's life, and we hope to see many of you there.

If you have a rugby jersey, please feel free to wear it!!!

The viewing/visitation will be Thursday evening from 5-8pm (with a rosary starting at 7pm). This will be at Desert Sunset Funeral Home (3081 W Orange Grove Rd; on Orange Grove, jus west of Shannon, but east of I-10; 520-297-9007).

The memorial service will be Friday morning at 10am at Calvary Christian Fellowship Center (3850 N Commerce Dr; Prince & I-10; 520-292-9661)



Directions from I-10 heading "West":

1:Take the exit- exit number 254- toward PRINCE RD. 0.3 miles Map

2: Stay straight to go onto N FREEWAY RD. 0.1 miles Map

3: Turn LEFT onto W PRINCE RD. 0.1 miles Map

4: Turn RIGHT onto N BUSINESS CENTER DR. 0.5 miles Map

5: Turn LEFT onto N COMMERCE DR. <0.1 miles Map

6: End at 3850 N COMMERCE DR TUCSON AZ Map

Our Giant!

I am so sorry to those of you learning this for the first time. I write with a very heavy heart today.

This morning at 10:20am, Josh became the angel that we all knew him to be.

I'm sure this comes as a great shock to many of you, as, in a way, it did to us. We saw Josh this last week and we knew things weren't right. He just didn't feel good. It became apparent that the cancer quickly and viscously attacked Josh's lungs. The doctors told us yesterday that Josh probably wouldn't make it much longer, despite his valiant efforts.

So, in those final hours, we encouraged Josh to go with God, to go home. Josh was surrounded by family and friends, and may now rest peacefully as he flys above us, cancer free. We know his work isn't done yet. He'll be watching over us always, making sure Gretchen and the kids are taken care of.

We thank you all so much for the prayers. We saw a few miracles these past 10 months, but now we can focus on the real miracle that we had with us: Josh.

We are planning for a viewing/rosary on Thursday night and a memorial service on Friday morning. I will update when I have the details.

Pray for our strength to get through this day, and all the days to come.

No chemo yet

Josh's body isn't quite strong enough to endure chemo at this time. He's feeling very nauseous and he sleeps to get through it. We pray that he will get stronger.

Still there

Josh is still in the hospital, and I think it will at least be a few more days until he goes home. He had the ascites from his abdomen drained today and slept most of the day because of his medications. He was supposed to get chemo today, but when I left at 7pm he still had not received it. Hopefully he will get it sometime tonight or tomorrow morning.

Please don't forget about the pancake breakfast on Nov 6th. If anyone has a connection to get groceries/giftcards please let myself or Nicole or Sherrie know. We would greatly appreciate it!!

Not Quite

Josh got the other lung drained yesterday, without problems. He spent most of the rest of the day playing Fable on Xbox.

Josh didn't have a very good day today, and his hospital stay is to be extended. He should have chemo in the hospital tomorrow. He was feeling very nauseous, and we aren't exactly sure why.

Don't let up on those prayers yet!

Plan of Action

Today we got the new plan of action for Josh's fight.

Josh moved up to the 4th floor today (not the ICU, but they closely monitor patients). Hopefully he will have the other lung drained tomorrow, and then head home on Wednesday or Thursday. Then he will get the next round of chemo asap. This chemo is going to include an extra drug: Erbitux. This drug came out at the end of February, and is supposed to work with the current chemo regimen.

The kids visited Josh at the hospital today. Of course, that really put a smile on his face!! The were both very excited about getting to lay with Daddy!

Good news and bad news

Good news first: Josh is off of the ventilator. They drained 1.5 liters of fluid out of the pleural sack surrounding the left lung. He was breathing better already and, as you can imagine, he was able to breathe a bit easier after all of that fluid was drained.

Bad news: We got the biopsy on the fluid. There is cancer present. I really can't go into further detail, because I really don't know it. I'm not quites sure where the fluid is coming from, but it is expected to come back. There are procedures to prevent this, and that will be looked into. Also, the right lung now needs to be drained.

Overall it is a very strange situation. We've got the "bad news" and then you look at Josh, and he looks so good (all things considered). He's been playing video games and watching football. Now that the tube is out he is doing some talking.

Thanks for the prayers, keep them up!

Also: "Happy Birthdays" go out to Bobbi (yesterday) and my dad (today)!

No new info

I just wanted to let everyone know that we have not received the pathology reports from the fluid. So, we still do not know what the plan of action is. In the mean time, Josh is very alert. Even with the ventilator in, Josh is awake enough to play video games! Can you believe that? Now we need his body to catch up to his mind, and just get better!

Just when things were looking up

As you know, things were going really well with Josh last week. Similar to past experiences, cancer and its effects have hit hard again. Josh was having difficulty breathing last night (short of breath). He ended up going to the hospital via ambulance late last night. They did some x-rays and CT-scans and it became apparent that Josh needed the ventilator again.

So Josh is now in the ICU sedated,on a ventilator (same ICU at NW). He has fluid in the lining of his lungs. Not sure exactly what this fluid is, but it's obviously not good. They drained one lung today and are biopsying the fluid. We should know more tomorrow. His vitals are holding stable.

We need some major prayers again. They worked last time and we have faith that they will work again. Please also say a prayer for our friends in the ICU.

Special Announcement

Let’s Eat!!!

In honor of Josh Allen and his love for pancackes we are hosting an all-you-can-eat pancake breakfast.


Saturday November 6, 2004

Between 8:00am – 12:00pm

Marana Community Center

13251 N. Lon Adams Road
Marana, AZ 85653

We are preselling tickets for $6.00 a plate and they will be $8.00 at the door! Kids 5 and under eat for free.

We are also looking for prize donations for a raffle that will take place during the breakfast.

This is a great opportunity to support Josh and the Allen family.

Let’s get together and have a good time!

If you are unable to attend and would like to contribute a gift in support of the Allen Family,

Please contact:

Sherrie Ketchum 404-7966 for tickets fantazmik@earthlink.net

Nicole Scoles 907-0220 for raffle/donations nicole@cpuman.net

Donations may also be made at any Bank One bank by making a deposit to account #661644807 or by writing a check to the "Team Giant Fund"

Birthday Celebration

Thank you for your prayers and birthday wishes. Josh was able to have a wonderful day. As you can see, Josh got to blow out the candles on the cake Crystal made as Gretchen and the kids watched.



We had a small gathering of some close friends at Josh and Gretchen’s house. Josh was feeling well, and was able to mingle, laugh and watch some football with friends. Check out the new photo photo album for the rest of the pictures.

Unfortunately, Josh has a fever today, which usually means infection. This is very common with TPN and central lines, but still something we would like to pass quickly. Pray that there are no complications and that Josh is able to get chemo this week.

Happy Birthday, Josh!

All things considered, Josh is having a great week. This is another “off” week from chemo, and he has some energy back. It has been so nice to see him walking around, going outside, playing with the kids and using the computer. It’s the perfect week for his birthday, which is tomorrow, by the way. He will be 26!

It is also nice to know that Josh has come down on his pain medications significantly. He no longer uses pain patches (these are patches placed on his back to keep a constant stream of medication into his blood), and he has decreased his IV pain meds. Obviously, this is a good sign and means the tumors aren’t causing extreme abdominal pain (hopefully because they are shrinking by the day!!).

Keep those prayers coming. Pray for Josh to have a great 26th birthday tomorrow.

DVT

As if Josh hasn’t had to overcome enough in this ongoing battle, another obstacle has been thrown his way. We found out the other day that Josh has DVT or Deep Vein Thrombosis (blood clots in the leg). These are in his right leg, one in his thigh, one in his calf and a third clot in the leg that is not in a deep vein. Click the DVT link if you would like to read more detail about the risks of DVT. Now Josh needs an injection each day of an anti-coagulant along with taking the blood thinner coumadin. For now, Josh remains lying down (still at home) in order to avoid knocking any of these clots loose. Please pray that they pose no further problems.

I know this is a long way off, but I want to remind you all about the Climb to Conquer Cancer. Many of you were there when we conquered “A” mountain this year, and we hope next year will be even better! I am on the planning committee this year, and I hope to make it another wonderful experience. I know the $40 registration fee is a lot of money, and that is why I am reminding you now. The climb will take place on the morning of Saturday March 12, 2005. We need to have our team registration for Team Giant turned in the first week of February. That is why I’m setting a goal for you all to have the $40 by Feb 1st. To break it down, try to put aside $0.27 a day (beginning today) OR $1.89 a week OR $8 a month. If you do this you will have the full registration fee! Team Giant is a crucial part of Josh’s battle, and we look forward to having a GIANT team next March!! I’ll give you more details as the date nears.

Visitors

Josh had a fairly nice “off” week last week. He was even feeling good enough last Saturday to go and watch Jake’s last soccer game of the season! Josh got another round of chemo this past Wednesday. It hit him pretty hard. The nausea has been unbearable, even with all of the medications. Josh’s diet has been upped to clear liquids when he is feeling up to it, so he has been partaking in some Jell-o when he feels ok.

We had some wonderful visitors yesterday! Remember Kevin from NY, who had the big surgery with Dr. Sugarbaker? Well he and his wife, Roni, came down for a short visit (they were in Phoenix for a work conference of Kevin’s). It was wonderful to see how well Kevin is doing. He had the BIG surgery back in February and a secondary exploratory surgery in July. He looked great! He is still recovering from things, but he is currently cancer free!! They have been a big help to us through email and prayer support. We had a very nice visit with both of them and you can see a few photos in the new picture album.

Also in the album are some pictures from June that I just got a chance to scan.
Jake loves school now, by the way.

Please continue to pray that the chemo kills the cancer in Josh’s body and that Josh can have continued strength (mind, body and spirit).


P.S. The blog has a new feature. Clicking on the small envelope icon at the bottom of the post allows you to quickly and easily email a link to the post to a friend.

Today was a scheduled chemo day, but it didn’t quite go as planned. First, I’ll tell you that last week Josh’s ileostomy started to work again (yea!), and that helps to greatly reduce vomiting (double yea!). The problem remains, however, that everything is diarrhea. This is expected because of the chemo, but it would be better if it were not so constant. Because of the amount of fluid Josh is losing through his ostomy, the oncologist decided to skip chemo this week (also his White Blood Cell count was low). He was scheduled to have a week-long break in chemo next week, but instead that will be this week. Hopefully this time off will allow his body to recuperate and be ready for the next doses.

Jake started pre-school last week. It took lots of effort on Gretchen’s part to get him to go, but he finally gave in. I think he’s getting more used to it, so hopefully it will actually start to be fun soon.

Crystal survived hurricane Charley from her hotel room in Orlando. She went on a trip with some friends, and luckily the hotel structure was strong. The worst they had to deal with was no electricity for a night.

A quick plug for myself: I’m currently looking for some part-time work. So, if you know anyone who might like to hire me, let me know. I’ll send over my resume! :)

Birthdays

Not too much has changed since the last post. The new chemo is pretty strong and requires 4 shots a week in order to help Josh’s bone marrow produce white blood cells (so he can fight off infection). So, Gretchen has added giving shots to her long resume of nursing duties. Josh will have another dose of chemo tomorrow. Please pray that the chemo attacks the cancer cells, and that the blockages will clear.

In an attempt to keep a sense of normalcy in our lives, we had a busy weekend. On Saturday Jake had another soccer game and then Gretchen and I took the kids to the Tucson Children’s Museum. They were hosting a special bug exhibit (Jake loves bugs!) where the kids were allowed to touch and hold certain bugs. We also got to try out some of the other things the museum had to offer. I’ve posted pictures of the day.

On Sunday we had a mini-celebration for Crystal’s and my birthdays (I turned 23 on the 7th and Crystal turns 18 on the 12th). The family got together for dinner and cake at Josh and Gretchen’s house.

Click here to see the pictures.

Chemo change

Things seem to be continuing about the same, and nothing has improved. It seems as though the chemotherapy that Josh was undergoing was not working well. Because of this, the regimen has changed. He is now on the SALTZ regimen: leucovorin, 5-FU and Camptosar. This is once a week for 3 weeks, and then one week off. He will also need 4 shots throughout the week.

Yesterday was his first day of the new chemo, so we are not yet sure how he will react. Please pray that this new chemo is the answer, and that it relieves his problems. We can’t wait for Josh to start feeling better. He does what he can, but understandably, he doesn’t feel up to doing much.

I've also added some new pictures taken with Jake's camera. If Jake isn't in the picture, then he was the photographer. Enjoy!

Bracelets

Bracelet sales have been spectacular, thanks for all of your support!!

I have added new designs and a bracelet perfect for guys and girls, and it's only $10!

Please take a look!

Cancer Awareness Bracelets

The fight continues...

Josh continues to fight from home. To me it seems like every day is a new battle, but Josh shrugs it off. Whatever it is that is blocking the intestine has yet to clear. Nothing is coming through his ileostomy, and anything that exits his body does so through his mouth. Please pray that the blockage clears and that the vomiting can subside.

Josh will be having chemo again next week, and it may be stronger this time. He seemed to do well handling the side effects of chemo and those stubborn tumors seem to need an extra push.

Of course his strengths continue to shine through. Josh even went to watch some of Jake’s soccer practice today. You can only imagine how Jake’s face lit up when Josh said that he wanted to go watch.

So, keep those prayers coming.

Thanks!

I just wanted to say "Thank You!" to those of you who offered and gave a wheelchair. We truly appreciate all of your help. Josh now has one that will work well.

He has chemo again this week, today, tomorrow and thursday. Also, he will be "tapped" for ascites (see July 4th entry for more details).

Please continue those prayers!

Thanks

New Pictures

Along with the new update, I want to point out the new pictures!!
 
May - July 04 Pictures

Believe it or not...

For the first time since May 10th, Josh is actually going home!!!  Today!!!  Yea!  Josh should be back at home in a couple of hours.  This is an exciting day, but at the same time a little scary.  Gretchen has become quite the nurse and she will be in charge of administering things for Josh through his IV (because he can’t take anything by mouth).   
 
Josh got the NG tube out (yea) on Thursday, and we need to pray that Josh does not need that tube again.  There is a possibility that if he were to need it, then he would have to have surgery to have a tube placed directly in to his stomach to allow it to drain out side of the body.  We pray that this does not have to happen.  Hopefully his intestines will function well enough to allow him to live comfortably, without severe nausea/vomiting.
 
We have a request:  Does anyone out there have access to a wheelchair (preferably light weight) that Josh could borrow for a while??  The insurance company only pays for either a walker or a wheelchair, and he already has a walker.  Josh is able to walk around with assistance from the walker, but a wheelchair would make things much easier while Josh is going back and forth to chemo.  Hopefully, Josh will not need it for very long.  If you have one, or know of someone who does, please let us know ASAP (email or call).  Josh has chemo again on Tuesday and we would like it in time for that. THANKS!!
 
You all have done such a wonderful job offering prayers and support to us, and I want to let you know how you can offer this support to others (if you would like).  There is a website called “Make A Child Smile”  (www.makeachildsmile.com) and it highlights 3 children each month who could use extra prayers and support, as they all have life-threatening illnesses.  I think it is such a great idea, and I plan on sending a few cards this week.  So, check it out if you have time.
 
BTW, those pictures I promised will be coming soon, I’m just waiting on a few things.

Last Monday-Wednesday Josh received a dose of the much anticipated chemo. This is the same regimin as he had previously (Oxaliplatin, 5-FU, Leukovorin), only the dosage is reduced by 30%. This should prevent the complications that arose last time.

Not too much has changed since the last update. Josh is still in the hospital with the NG tube. His advancements in physical therapy are doing very well, and his strength is increasing. Nothing new with the ascites from last week, hopefully that fluid is not returning, but that is a possibility. I'll let you know when I have more information.

Chemo will take place again next week, for now hopefully things will go smoothly.

Jake joined a soccer team, and I promise pictures by the end of the week, so check back!

Nothing's easy

I think that we’ve all learned that nothing comes easy these days. This has not changed. Not only does Josh have some sort of a blockage, he also has fluid buildup in his abdomen. This is called ascites. The amount of fluid that was present required drainage through a large needle inserted into his abdomen. This produced 2.5 liters of fluid. As you can imagine, that is a lot of fluid, and Josh felt great relief after the drainage.

We still don’t know for certain why all of this fluid was building up. We also don’t know the exact nature of the blockage. There are a lot of “ifs” and “maybes,” but we are living in a world of unknowns. He should be starting chemo very soon (we are hoping possible tomorrow or the next day). From the information we know now, Josh will be in the hospital at least another week, we pray that it won’t be much longer than that.

Please pray that the blockage clears without any further action.

Also, Kevin (a friend I told you about back in February who had surgery with Dr. Sugarbaker) is headed back for a second surgery. This is common for Dr. S to perform an exploratory surgery following the BIG surgery, plus there have been some new developments and chemo will be involved in the surgery. Please pray for Kevin as he has surgery on Tuesday at 9am (EST) and for his recovery.

Clean!

I just wanted to let you all know that I got my biopsy results and my appendix was clean! Simply "dilated." The surgeon congratulated me (he's been involved with Josh's surgeries), so that is finally some good news for us.

Things are about the same with Josh. We've just got to give it some more time.

I forgot to mention this before, but Josh's tracheostomy was removed on Monday. He now has a little hole (which is healing) with a gauze dressing to cover it. This has helped his voice to recover a lot, and he basically sounds normal. Also, Josh has been adding weight and he weighs around 200lbs, which is great to hear.

BTW, Josh isn't on the 4th floor anymore, he's down at the 3rd.

Enjoy your long weekend!

another bump in the road

Days before heading home, things changed, as they always seem to do. We found out yesterday that Josh has a partial ileus. This means that his small intestine is partially blocked. This seems to be the reason that Josh has been experiencing lots of nausea and pain. So, last night Josh moved back over to Northwest hospital, this time to the 4th floor.

In order to relieve Josh’s pain and hopefully alleviate the problem, an NG (nasogastric) tube had to be placed. You may remember this tube from before it is a tube that passes from the nose into the stomach. Josh knows it as a little taste of hell. Fortunately, Josh was able to convince the doctor to have it done under sedation. The tube has already given Josh’s abdomen some relief, and hopefully it will continue to do so.

The hope now is that the NG tube will allow this blockage to work itself out so that his small intestine can get back to work. We’d like to get past this setback, and get Josh home.

Minus one appendix

Well, I’m home! The surgery went well today, and Dr. Chaisson said that everything looked normal and healthy (even my appendix). So, now we just wait on the biopsy results to confirm that. I was able to leave the hospital around 4:30pm, and have been on my couch ever since. I’m pretty sore, and having problems with nausea, but I’m on plenty of painkillers to get me through it. I figure it’s nothing compared to what Josh has been through, and now I admire him even more just from knowing a tiny taste of his pain.

So, I’ve got 2 little puncture scars, and funky belly button. They should all heal quite well. I even had a ventilator during the surgery, which I wasn’t expecting. Everything went well with that, too. Thanks for all of your prayers and support!

For Josh, please pray that his pain and nausea can be controlled, and of course, for continued strength.

Jake turns 4 tomorrow!! Happy Birthday!

More ups and downs

Josh had the PET scan yesterday and we got some good news and some bad news. The good news is that the chemo seems to have shrunk the tumors in Josh’s abdomen. The masses that were there are smaller or not there at all. Some areas are clear, and some still have traces of cancer. The bad news is that the scan showed that a few of Josh’s lymph nodes in his chest are positive for cancer. The cancer in the lymph nodes came up very faintly on the scan, and may not have shown up on a CT scan. So, it looks like that Barium in his colon may have been a blessing in disguise.

Seeing the cancer in the lymph nodes is an indicator of the status of surgery. It looks like that surgery won’t be anytime soon. The trip to DC for this weekend along with the surgery in July will be cancelled. Josh’s oncologist is going to speak with Dr. Sugarbaker to discuss the findings and hopefully set up a new game plan.

The plan for now is that Josh will stay at Health South for about another week. This will hopefully strengthen him more, so that he can have some more chemotherapy. The exact plans for chemo are not set out yet, we should find out more in the next week.

I know it is difficult to tell if what you just read should make you happy or sad. I’ve been struggling with that, too. But I ultimately think things are headed in the positive direction. The cancer responded to chemo, and shrunk significantly. We now pray that that continues. Josh can now focus on strengthening his body, and hopefully add some of that bulk that we were all used to seeing.

We’ve all been praying for the best outcome for Josh, and think that this is one step in that direction (even if we don’t really understand it).

PET Scan

Ok, that PET scan that I mentioned the other day is taking place tomorrow. It is an intense test and takes about 3 hours total. We need major prayers for this one. The test will tell us what is going on with the cancer. Of course, we are shooting for the moon, and we pray that all of the cancer is dead. Pray that everything goes well and that it shows NO cancer! The test is scheduled to begin at 3:45pm.

Josh was doing pretty well today, but that was after 2 rough days. He was pretty sick on Sunday and Monday, and he wasn't able to do as much PT as he would have liked. He's not taking anything by mouth, to avoid being sick. (He has been back on TPN all of this time).

Keep those prayers coming! Thanks!

Physical Therapy

PT has begun. Josh had a big day on Friday with about 3 hours of therapy. This includes physical, occupational, and speech therapies. The weekend is usually pretty laid back, with not as much structured therapies. Josh is staying active, though. On Monday he will begin a big week of lots of therapy. It is crucial that he builds his strength in the next week. Josh and Gretchen are scheduled to fly out to DC next Sunday. Please keep this trip in your prayers for many reasons.

My surgery is still on schedule for this Friday at 1:30pm. I should be home later that night, and will hopefully give an update on Saturday. Josh should also be out of HealthSouth by then, in preparation for their trip.

Happy Father’s Day Dad, Josh and all the dads out there!

Out of the ICU

And out of the hospital! Josh has moved over to Health South, a rehab facility across the parking lot from Northwest. This is a big step, and will hopefully prove to be very beneficial. At Health South Josh can focus on working hard to build his strength. Visiting hours are from 4pm-8pm, and the rest of the time is designated for work and rest!

I’m sure you are all wondering how that CT scan went, but he didn’t end up getting one. He still has some barium (x-ray contrast) in his colon, and that ruins the CT image by projecting metal. So, instead he will be getting a PET scan at some point soon. Hopefully that will go well.

On June 27, Josh and Gretchen will be heading to Washington DC to have a consultation with Dr. Sugarbaker. They have an appointment on June 28, and it is a very important meeting. Dr. S will explain the surgery and its risks in detail, and he will decide if he thinks Josh is strong enough to endure the surgery on July 15th.

I honestly don’t know when the optimal time for Josh to have surgery is. Please pray that everything happens so that Josh can have the best outcome.

Happy 31st Anniversary to Mom & Dad!!!

and Happy Birthday to my cousin, Shelby! :)

back and forth

Everything is going well now, Josh is stable. He is, however, back in the ICU. His blood pressure dropped a bit low yesterday, and the docs wanted to make sure that he could be very closely monitored. I just came from the hospital and he just finished a walk through the halls, with some assistance from a walker. And that wasn’t the first time today that we went walking! It was definitely great to see that!

Now I get to request a few prayers for myself! Since Josh’s cancer is so rare, I have had quite a few tests done. My CT-scan showed a slight dilation on my appendix, so as a precaution, I’m going to go ahead and have it removed. My surgery is set for June 25, and is going to be minimally invasive. I’m sure you’ve heard of laparoscopic surgery, but I’m going to have needlescopic surgery. This is even less invasive and I shouldn’t have to stay in the hospital overnight.

I have failed to mention this the past month, but I want to give a big THANK YOU to Dan Hubbard from the whole Allen Family. Dan lives in San Diego, but came down to Tucson for many weekends and weekdays, to help us and Josh through this tough time. Thanks Dan! Now that Josh is conscious, he would love to see you!

A message from Gretchen...

Hi, this is Gretchen! I wanted to send a thank you to everyone that has helped us through these past 6 months and especially these last 4 weeks. Josh is amazing. He is doing very well, making huge improvements each day. Please continue to pray for physical strength and a great CT scan.

We could not thank all of you enough for your support. We are beside ourselves. We have seen a miracle before us, God hears your prayers. He has given us all strength for Josh and each other. I am humble and very grateful.

We have had wonderful nurses (like our friend Jim!) (and thanks to Pat for the long phone calls at any hour!) and amazing doctors. Thank you to The Fountains for being such wonderful and supportive co-workers!

Our true friends have brought us food; sat with us, prayed for us, bought bracelets…the list goes on! Our family cannot be left out. Thanks to my family who has taken time to visit (We love you Apple Pie!!) and help. Thanks to my wonderful mother who has taught me strength, who stays with my children, and helps me through each day. Thanks to my sisters who make bracelets to help with our bills, who put themselves where they are needed and Marisa, this website is awesome. Connie and Ernie, thanks for Josh. You have been wonderful parents. I love you both! Connie, thanks for spending so many nights in a chair so I can feel OK about going home to the kids.

This is the hardest time of our lives, but I am so filled with love! Thanks so MUCH! We are so blessed to have all of you in out lives!

Moving on up...

...to the 3rd floor!! Yea!! Josh is out of the ICU and back on the oncology floor!! I have to admit it is a little bittersweet. We are so happy to have him out of the ICU, but we had to leave some amazing nurses. We'll miss you guys!

Josh is really happy to be out of there, too. He's not hooked up to so many monitors, and he gets some freedom and privacy.

So, we are still praying for that clear CT scan (which he probably won't have until early next week).
We also need for his intestinal lining to be fully recovered, and for his vocal folds to function perfectly, so that Josh can eat.

The kids got to see Josh again, and it was a wonderful visit. By the way, Grandma Bobbi and Grammy are here watching over the children like the angels that they are! We would be lost without them. So, they are here until further notice.

Progress

Josh has been making great progress each day. The kids gave him a great visit today (as they did the other day, too). It's so wonderful to see how happy they all are when they get to see each other. Lots of hugs and kisses. That in itself is a lot of activity, but that was only part of it.

Josh's tracheostomy was switched to a smaller size today. This will allow more air to get out through his mouth, and over his vocal cords. He also got a sort of plug/valve that goes over the opening and allows him to breath in through the trach and out through his mouth. This also allows him to talk a bit. For now his speech is that of a strained whisper, but that should improve with practice and time.

After all of that, Josh took a ride around the hospital in a wheelchair. He even went out into the extreme heat for a few minutes (that's about all any of us could handle!). So, that was all a nice change of scenery. Josh wants to go home though, as we can all imagine. He should be out of the ICU any day now, and up to the oncology floor. Hopefully, after that, he will be home some time late next week (so pray for that). Josh REALLY would like to go swimming asap!

No CT scan yet, so keep praying. Thanks!

Continued prayers

As recovery continues to progress, we have some specific prayer requests:

Please pray that:

The upcoming CT-Scan will show miraculously marked improvement.
The intestinal lining recovers fully.
Josh can put on weight and rebuild his strength quickly.
That Josh's mind is able to stay strong through all of this.

Thanks Everyone!

Hi everyone, I just wanted to let you know that things are continuing to progress. Josh is off the respirator and breathing through the trach with assistance of extra oxygen.


PT is continuing...he's stood a couple more times, but it is still a slow progression.

He's doing more communicating through sign language, and hopefully he will be talking sometime this week.

Trach

Josh got his tracheostomy (that's the name for the tube placed during the tracheotomy). A surgeon placed it yesterday afternoon, without problem. It was a "simple" (meaning simple to the professionals) procedure and only took about 1/2 hour.

So, he FINALLY has all of the tubes out of his mouth! That doesn't mean he can talk yet, though. That will come with more time. The tube in there before caused trauma (as expected), and his vocal cords need time to recover. The wheening process has already begun, and should go more smoothly with the trach.

Physical therapy has also gotten more advanced. Today he sat up for a short time on his own, and he even stood up!! This is a huge step, and hopefully represents all of the improvement to come.

We have met some amazing people during our "camping trip" in the ICU waiting room. The people come and go, some with better news than others, but they all have a special place in our hearts. Our prayers are with all of you, and thank you for your support.

Special thanks to Trevor and Logan! Remeber when I told you about them doing chores to raise money for a bracelet? Well, they've done it again! This time they sent a wonderful care package for the kids. Thanks you guys, Jake and Caily loved receiving the package!!!

I have a very special prayer request. There is a special young man around 15 years old who is going through a very rough time. He, too, is on a ventilator, with major problems. His name is Michael, and he could use prayers for overall health, and extra prayers for his organs (kidneys, lungs and immune system especially). Thanks!

not yet

Josh didn't end up getting the trach this morning, as scheduled. He was doing really well, and full of strength. The Dr. took him off all pain meds to make sure that all of his efforts were able to focus on breathing. Josh did his best, but there was still too much strain. Trach plans are again in the works. Looks like this may be another blessing in disguise, but I just hope he can get the trach soon (tomorrow).

Now Josh is back on some of the pain meds, and is resting. Much of his pain comes from the discomfort of the respirator along with an oral-gastric (OG) tube going down his throat.

That's really it for now, he was very alert and responsive today. Vitals are holding strong.

hanging in there

As you all know, this has been a very rough ride...and the ride continues. We've been trying to get that ventilator out since Saturday, but to no avail. Josh can go most of the day breathing on his own, but a some point he loses oxygen and the machine has to be turned back on. Because of this Josh is going to have a tracheotomy to allow him to have breathing assistance for a longer period of time. It is also easier to wheen him of this because it can be easily put in and taken out.

Please say a prayer that this surgery goes well. It will take place tomorrow.

In the mean time Josh is awake and communicates with finger spelling and hand squeezing. Although his strength is much better, he still has a hard time staying awake and comfortable for very long.

As I think I mentioned before, his top layer of skin is peeling off, causing great discomfort. Plus he has general pain from all of the trauma.

Keep those prayers coming!

holding stable

Things have been pretty stable, which is a good sign.

They tried weening Josh off the ventilator today, but after a few hours it was too much strain. They will try again tomorrow. I really hope that it can come out tomorrow. Josh is doing such a wonderful job at building his strength. He does exercises, and practices different movements. Of course, we all already know that he is really strong.

For unity of prayer, we have decided to all say the same prayer at 6:30pm (Tucson time, of course) tomorrow, tuesday. The prayer is the one mentioned before:

"O God of heavenly powers, by the might of your command you drive away from our bodies all sickness and all infirmity: Be present in your goodness with your servant Josh, that his weakness may be banished and his strength restored; and that, his health being renewed, he may bless your holy Name; through Jesus Christ our Lord. Amen. "


Source: Book of Common Prayer 1979


Thanks!

Thank you all for the wonderful prayers, and support. We have had such wonderful friends who bring us constant meals, entertainment, and just dwindle away the time with us. We have even had all but three of Josh's elementry school teachers come to visit! THANK YOU!

Josh is slowly recovering. Respirator is still in, and is a major prayer area. Please pray that his muscles recoup very soon, so that he can breathe on his own. Josh is awake a lot now, and we've been doing a little bit of muscle practices with him. He is going to need some physical therapy, though. His body has been through a lot, and his muscles took a hit. He is trying so hard, though. Of course, we all know that Josh is really good at exercising.

This skin thing from yesterday does seem to be an effect of everything put together. Basically, the chemo burned him from the inside out, and now his skin is peeling.

Prayers:
Strong muscles
Ventilator out
That the chemo still in his body can continue to fight the cancer.

More...

I don't have much time, but I want to keep you updated.

Things are moving along with a few glitches along the way. Currently Josh's skin is reacting to something and causing blisters. A dermatologist is headed over right now, so hopefully she will confirm that it is simply a response to the Xigris (the drug he was on) or the Sepsis.

He is off all of the blood pressure medicines and off of sedation. He still has a fever and is still sick, so his consciousness is strained. He's currently practicing on moving muscles, so that he will be strong enough to get off the respirator. Baby steps. He's given each of us a little hand squeeze and a wave. He knows we're there, and can respond to that.

Much thanks to God for the healing thus far.

news from the ICU

Things have started looking up. Yesterday Josh's WBC was 7.1!

Tuesday and wednesday were stable days, hopefully allowing his body to heal. Last night things went well, and fever came down (with the help of a "cooling cloud") and so did some of the medications. Josh has been responsive, wiggling toes and squeezing hands on command.

If things continue as is, the respirator should come out this weekend. Josh will have to be awake for that, so it will be nice to get to talk with him.

There have been some blood clotting complications, but nothing real serious. His body has been very swollen, but that has started to subside. Pray that things continue at a steady pace.

As you pray for Josh's healing, please say an extra prayer for Jake and Caily. They really miss their daddy, and are anxious to see him.

Thanks for the prayers and postings, I will pass them along to the family.

P.S. If you have ordered a bracelet, please be patient. Crystal and I are working hard on getting them done. All of the commotion has made it difficult to keep up. We will get them to you, I promise. Thanks for understanding.

up and down

I don't have much time, but I want you to konw how things are going.

Yesterday was one of the toughest days ever. Yesterday was the Miracle of Fatima, and I think she helped us out and gave us a miracle. Josh made it through a really tough time. He's surprising even doctors.

White Blood Count up to 4.4! This is a great, that means it is climbing. Now we need to pray that while that number increases, those WBcells fight, fight, fight!! They need to take over for the drugs, and fight this infeciton out of his body.

Please continue those prayers, Josh needs them, and they are helping us to get thorough this. focuse prayers on WBcells, strength, steady heart beat and steady blood preassure.

continued prayers

Thank you so much for all of your support and prayers. We feel it. This fight continues to be a roller coaster. Josh is doing his best to fight this, but this is one nasty infection.

This doesn't help much now, but the party is cancelled. I guess Josh just doesn't like the spotlight off of him, so all parties are suspended awaiting permission directly from Josh.

As he continues this fight, he needs your prayers. I hope to update with good news soon. In the meantime, we are all living in the NW ICU waiting room.

PRAY!

Thank you all so much for all of your prayers, we feel them and Josh feels them. He needs prayer now more than ever.

Some of you know, but I wanted to let ALL of you know. This has been a very rough week, and yesterday was a VERY ROUGH day. Josh's body was having a hard time fighting everything, but his spirit kept this in line. His body was in septic shock. His heart beat was about 170 beats/min for about 4 hours, with an extremely low blood pressure. Josh is on a ventilator and sedated as a precaution. They didn't want to consider an emergency situation, where the ventilator would need to be put in. So, they put it in to regulate his breathing and make sure his breaths are deep. Late last night they started him on a new drug that fights septic shock. Please pray that is does its job without complications.

His heart rate is down to the mid 120's and his blood pressure has come up. His high fever is slowly coming down.

We always knew Josh had a BIG heart! We just didn't know how strong it would be. That heart kept him alive. It was strong enough to endure a marathon runners fastest pace for a long time. I think all of his wrestling, football and rugby helped to condition him for this task.

I will try to update when I can. We are all in the 1st floor ICU waiting room (only immediate family is allowed to see Josh right now). I came home to clean up because I felt Josh was in a good place. I'm heading back there right away, and we will probably be there for a couple more days.

I JUST spoke with my mom as she came out of Josh's room. She said he is looking better. His body is starting to function better. White Blood counts are still VERY low. Prayers of thanks and continued healing are requested.

"O God of heavenly powers, by the might of your command you drive away from our bodies all sickness and all infirmity: Be present in your goodness with your servant Josh, that his weakness may be banished and his strength restored; and that, his health being renewed, he may bless your holy Name; through Jesus Christ our Lord. Amen. "


Source: Book of Common Prayer 1979

So now we know

We now know what is causing all of the ruckus and pain. It turns out that the chemo has affected Josh’s intestines a bit more than we had imagined. The chemo actually burned the insides of the small intestine, and now the lining of the inner wall has been coming out through his ileostomy (he got this back in February, and is reversible), and causing pain as it does so. Because there is bile and bacteria in the intestines, it is agitating the parts without lining. This is causing fever and infection. So, please, please, continue those prayers. It should take a week or two in the hospital to recover from this. His white blood counts (WBC) need to come up and start fighting on their own, and then the intestinal lining will begin to rebuild itself. Because his WBC are so low, he is susceptible to infection and we ask that Josh has no visitors, and no flowers.

The doctors and nurses at Northwest Medical Center are doing a wonderful job, and we thank them so much for their caring and support for Josh.

We are still going to be having the graduation celebration this weekend, but unfortunately, Josh will not be able to make it.

Graduation

As many of you know, Crystal is graduating from Tucson High next week. We will be celebrating this on Sunday, May 16. Many of you should have already gotten your invitation and announcement.

I just want to let you know that we had a little technical difficulty. The invitation says the party is at Casa Molina, and in the last couple of days they changed their name. It is now called "El Chilito" (the sign is green) so please don't be confused. It is located on the West side of Thornydale, North of Orangegrove.

This will also be a celebration of my Dec '03 graduation from the U of A (as you know, the previous party was cancelled).

Change is good

Obviously, I changed the look of the page...you are at the right place...hope you like it!

The battle continues

OK, so I realize that in my last update I didn’t make it at all clear that Josh got to go home from the hospital. He went home last Monday and was feeling great. Then chemo came, and as it often does, knocked Josh off his feet. On top of that, he seems to have gotten another sort of infection, and he headed back to the hospital early, early this morning. They are not quite sure where the infection originated, and so he is on a slew of antibiotics and cultures of different areas are being tested. We should have a better answer at the end of this week. Please say a prayer that this infection passes quickly. It is a rough one, and Josh has his work cut out for him.

Thankfully, Josh is absolutely the toughest person that I know, and he can take a lot. I don’t think that this cancer had any idea who it was dealing with when it decided to attack Josh (and the Allen family, at that!!). Especially with all of the support of everyone reading this site. So, please, keep up with the prayers, they are appreciated and needed.

What a trooper!

Josh has done such a great job through all of this. On Friday, he headed back to the hospital with the same problem from last week (seemed to be some sort of blockage). After many tests, it seems that it is nothing of major concern, and it should work out as long as Josh is careful with what he eats. In order to supplement his nutrition, Josh will be back on TPN (remember it from January?? basically, IV nutrition in a bag). This should help him to add weight and give him the strength to get in good shape for the BIG surgery in July.

Josh will be having yet another round of chemo and Avastin this Wednesday-Friday (the chemo will continue in this manner until mid June). Please pray that the side effects be minimal.

I have finally added some new pictures. It's a simple layout, but it does the job! I hope that you all enjoy!
You may click here to see the pics, or click the link on the right.

Home again...

Josh was able to come home on Tuesday afternoon. Things seemed to work themselves out, although some problems remained for the past couple of days. The intestines seem to be working well again, though, so we are thankful for that. Please pray that they continue to work. On Wednesday Josh had another dose of Avastin (he missed it last Friday because he was in the hospital).

Right now Josh is focusing on getting his strength up before the big surgery. It is imperative that he be in good shape so that recovery will go well. He has been going for walks, doing exercises and lifting some weights.

Things to pray for:
That Dr. Sugarbaker will agree to perform surgery earlier than currently scheduled.
That we can figure out the best living situations for Josh’s “support team” while in Washington, DC
That Josh’s bowels function well.
That Josh can continue to build strength and add weight.

Thanks for all of your support!

Well there's good news and bad news....

I’ll start with the bad news….Josh is back in the hospital. Hopefully it’s nothing serious. It seems to be something with his intestine and could simply be a reaction from the chemo. However, there is always a possibility that there is something more, and that is why we really need some prayers!! Pray for a quick recovery from this bump in the road. We hope to have him home by Monday. He went in early this morning and I just came from the hospital and he was much better than he was previously, so hopefully this will just work itself out.

Now for the good news…we have some pretty good indications that the tumors are shrinking significantly. The “tumor markers” in the blood have come down a lot and the tumors in the abdomen actually feel much much smaller. So, along with your prayers say a prayer of thanks for this wonderful occurance. Also, the Oncologist, Dr. Rosenberg feels that Josh is ready for The Big surgery ( I have referred to this earlier, Dr. Sugarbaker in Washington DC is the surgeon). So, Gretchen is doing her best to get a surgery date as soon as we can, but it looks like it won’t be until July. Of course, I will keep you all updated on that. We are really hoping that an opening will come up and he will be able to have the surgery sooner rather than later. Dr. Rosenberg was very encouraged and excited by Josh’s progress so far, and we hope that today’s events will soon pass.
FYI, surgery (with a specialist) is imperative for this type of cancer, and the only way to really eliminate it. We have been praying that the tumors would shrink enough to enable the surgery, and it seems as though that has happened and Josh is just about ready for the next step in this fight.
Thank you for your continued support.

A-OK

Just wanted to let everyone know that the port placement surgery went as planned! Josh is already home and doing great!

Turducken

Hey everyone, I hope you have your taxes done by today! :)
I hope everyone had a great holiday weekend. Josh was tired from the chemo, but the kids had a great day, and we all had lots and lots of chocolate!
On Monday we found out that Josh has a staph infection in his PICC line (the long IV in his arm) and he had to have it removed. So, now Josh is going to be getting another Groshong chest port (like what he had before). It will be surgically implanted on Friday morning around 8:30am (so get your prayers in!). This type of port should be less susceptible to infection now that he is not on TPN anymore.
I think most of the family is still recovering from the BIG dinner we had last night. Thanks to Tyson’s hard work and my mom for providing the goods, we had a TURDUCKEN for dinner! If you don’t know what a turducken is, it’s a turkey stuffed with a duck stuffed with a chicken! Tyson had to de-bone all of the poultry and sew them up with the stuffing the night before. We cooked it for about 8hours and ate it last night. It was really good, and we had lots of leftovers even after about 15 people ate dinner! In the next couple of days I plan to post some pictures of the dinner. Josh provided dessert by making some of his delicious cookies!
Happy 2nd birthday to Cailyn on Sunday!

Overall Josh is feeling good. He had a big weekend and was very busy! He went with the family to a birthday BBQ on Saturday night, and had a great time. On Sunday he and Gretchen and the fam went with some friends up to Phoenix for the day. Josh got to do some shopping at the electronic stores and they all met up at a train park. I didn’t go, but it sounded like they had a lot of fun. Then we had a family cookout at my parent’s house. So, as I said, it was a big weekend!

Wednesday starts another round of chemo, and an additional drug. This is a new drug called Avastin and it was just approved by the FDA in February. Its purpose is to separate the tumors from the body. It has shown to work well in studies and Josh’s oncologist has seen great improvement in other people that he has given this to. So, please pray that this new drug works well with his current regimen and also pray that he does not suffer any of the rare side effects.

FYI: Thanks to Josh’s friend Henry, I have registered a new website. It is Basically, it is an easier way to get here (by going to the page and clicking on “Josh’s Update Page) or to get to the bracelet page (by clicking on “Cancer Awareness Bracelets”). So, if you want to pass the website along to others, you can simply refer them to www.giantallen.com

We have been getting lots of support from all of you out there and it is so greatly appreciated. We recently found out about a couple of young boys who don’t even know Josh, but are saving their money to help support him. It is such a touching story, that I wanted to share it with all of you, and say “thank you” to this wonderful family. Below is the email that we received from a family friend:

I sent an email to all my friends in my email address book about Josh and
told them to look at the bracelets Marisa is making to help Josh. I asked
them even if they couldn't buy a bracelet to please pass the email on, maybe
someone else would be able to buy one. My sister Sandy got my email and
sent an email to her friends in her address book.
Hopefully this will keep going and eventually help Josh. Sandy told her
grandsons Trever 9 and Logan 7 about Josh. I thought it was so sweet when
she told me what Trever and Logan were doing. They had been doing chores to
buy Pokemon cards. When they heard about Josh they decided they also wanted
to earn money to help Josh. They said they wanted earn money to buy their
mom a bracelet for Mother's Day. Not only would their mother get a
beautiful bracelet, but they would help Josh too! They went into great
detail telling how 90% would go to pay Josh's medical bills and 10% would go
to Cancer research. They are now going to their grandparents and neighbors
doing chores to earn money to buy the bracelet. They made a special piggy
bank and wrote on it "Hope for Josh". They earned $10. last weekend and $5.
went into Josh's bank and $5. went to buy Pokemon cards. This is
inspiration to us all, even small children are fighting to help Josh!

I thought you would feel inspired to fight this cancer even harder knowing
so many people are praying for you and rooting for you!

GO JOSH! FIGHT!!! (that was a cheer) :)

Quick Update

I just wanted to let you all know that the stint removal went well. I just came from the hospital and Josh had just woken up, and he looked great and felt great. Thank you for your extra prayers! He should be heading home sometime within the next hour. :)

Thanks to everyone for all of your support and prayers…they are working! Josh has been doing pretty well. That kidney infection turned out to not actually be an infection (which is good), but it is a problem with his stint (which is not good). On Monday Josh is going to have a short procedure done to remove the stint from his kidney. (So be sure and say a prayer around 2pm). Hopefully his kidney will function ok on its own, and the stint won’t have to be replaced.

This week was a chemo week. Lots of trips to the oncologist. His white blood count was low this week, so they gave him a shot for that today, which should bring those counts back up.

Josh has definitely been keeping busy…working from home when he can. Last week he even went shopping a couple of times, and he tries his best to eat whenever possible (trying to pack on some pounds).

Yesterday we took the kids to the zoo, which was lots of fun, and later we went to a school carnival. Jake and Caily had a great time playing everything.

So, that is basically all for now. Thank you to everyone who has shown their support by getting a bracelet. We all truly appreciate it.

Awareness

Well, it’s been a while since the last update. I’ve been pretty busy on my next endeavor. First things first, though. Josh has been doing pretty well over the last week, with the exception of the last couple of days. He seems to have developed a possible kidney infection, so please say a prayer for quick healing. Last Wednesday-Friday Josh had another round of chemo, and he will have another next Wednesday. Bobbi and Grami came into town on Monday, so that will be a great big help for everyone here.

As for my newest hobby…I have decided to begin a fundraiser for Josh’s medical bills as well as general cancer research. To do this, I have been making Cancer Awareness Bracelets that I designed. At first I made them just for Josh’s caretakers, but after some praises and requests, I decided to give everyone a chance to own one! You may recognize them from our wrists at the cancer climb. I have put a lot of work into organizing all of this, and I hope that you enjoy. The web address is http://www.memebers.cox.net/cancerawareness Pictures of some of the bracelets are online, but they look even better in real life!! Also, I can always make you a new design, with you in mind. I can also make different colors to represent different cancers (appendix cancer does not have an official color, so I use lavender which represents “general cancer”). So, please take a moment or two to check out the page, and buy yourself, or a loved one, a bracelet.

We conquered the mountain!!

The climb was awesome! Anyone who was there would tell you the same. We had a turn out of about 50 people for “Team GIANT” and we all made it the 3 miles up and then some! The weather was beautiful, and we had a great time. Once we got to the top my mom drove Josh up there to join us for some hot dogs and pictures. While we were up there I found out that our team raised the most money!! This is especially due to a very generous donation by Aunt Sharon and Len! Thank you both!!!!! We raised a total of about $3,000 for cancer research!!

After the pictures and hot dogs, we had the option of taking a bus down the mountain, or walking down. I think just about everyone on our team opted to walk! Even JOSH!! That’s right; he walked down the full 3 miles! It was great to seem him getting such good exercise. As you can imagine, we were all pretty tired after our big day. The next day Josh woke up feeling pretty good and he made the family breakfast.

For those of you who couldn't make it out this year, get ready for next year! We are definitely planning on making this a tradition. Plus, there may be more events later in the year.

I have uploaded the pictures from the Climb, look under the “Links” section.

We have a very special “thank you” to the Accounting department at The Fountains!! They put together a wonderful gift basket for Josh, Gretchen and the kids. It was a wonderful surprise, and just what they needed! Thank you to those of you in the Barney building!! :)

Get ready to climb!

…or, if you are cousin Michael, get ready to run up and down the stairs. We are all getting very excited about the Climb this Saturday. The T-shirts look great! I emailed most of you all of the pertinent information about the climb. I’m not sure that I got the info to everyone, so I will post it below.

"I am definitely going to bring the shirts on Saturday morning, but if you would like them before that, then we are going to have to figure something out. Let me know if you would like to make arrangements to get your shirt early. Remember, they are red with white writing (I'm sure you want to coordinate your outfits!!).

The plan for Saturday: Meet at Pima Community College West campus (2202 W Anklam Rd), the parking lot is on the SW side and I'm sure it will be quite obvious where everyone is. The walk begins at 8am, so plan to be there a little early to get your shirts (I'm going to get there around 7:15-7:20ish). I've been told there will be Krispy Kremes and I'm sure coffee. The walk is 3 miles up to the top of "A" Mountain. We are all supposed to meet at the top so that we can get a team picture, so please plan on that. Also, there should be food at the top. There will be free shuttles up to the top if you can't make it up there, and shuttles back down to get everyone to their cars. Everything should be completely done by Noon.
Hopefully you know what I look like, so you can find me. If not, just look for my shirt. The back design say's "Team GIANT" (I'm sure you will recognize it as the best shirt design there!!) :)
I think there will be people with water there, but I say bring a water bottle just in case.
OK, I think that covers everything. If not, email me."

Things are going ok with Josh. The chemo is very tough, so it makes him tired. This week he has a break from the chemo, and he will get another dose next Wednesday.

I wanted to say “thanks” to a few of you who notified me that you have donated blood. Michael (a regular donator), Marie, Jim and Marissa (even though Marissa had passed out the first time she donated), and Alice (who got 5 others in her office to donate with her). Thanks guys!

Back home

After a full day of waiting to be discharged from the hospital, Josh (and my mom) finally got to go home Tuesday evening. Yesterday he had a round of a new chemo. They are Oxaliplatin and 5FU. The Oxaliplatin is given in the Dr.’s office through the IV and the 5FU is set up in the office and administered for 24hours via a portable pump in a pack worn around his neck. Josh has to avoid cold things for about 48hrs after treatment because of the oxaliplatin. He may still lose his hair due to the 5FU, so we’ll keep watch of that.

Right now he is concentrating on eating. We need to get some weight back on him, so he is on a seefood diet…he needs to eat whatever he sees!

Today is Josh and Gretchen’s 4th wedding anniversary! Congratulations!

Prayers for others...

I just found out about 2 more people who have undergone the big surgery with Dr. Sugarbaker. One of them is a 21 year old girl named Sara, who has had some difficulty recoverying and the other is Alice. They (along with Kevin) are taking it one day at a time, and could use some extra support. Thanks!

New Pictures!

I have completely re-created the picture page (thanks to Josh's help!). Let me know if you have trouble viewing the page, so that I can create a simplier page for slower internet connections (so, if you can't see the page, send me an email!!).

Josh got the NG tube out on Friday night and he's feeling pretty good. He is slowly introducing clear liquids then hopefully some solids. We are hoping to get him home tomorrow (Monday) so say a prayer to make sure that happens!

Keep up the prayers, posts and positive thoughts!

Ok, so I’ve gotten a bit behind on updates, but I’m here to catch you up!

So the last I had written Josh had had the NG tube removed, I spoke too soon. The next day he needed the NG tube replaced because of some problems. Turns out the small bowel blockage didn’t want to go away on its own. On Wednesday it was decided that he would need another surgery, and before we even had time to settle in on the decision, the surgery took place. We figured it would take a couple of days to get him in the surgery rotation, but it took about 24hrs. Josh’s surgeon, Dr. Burpee, wanted to get it done quickly. The surgery went pretty well, and it should allow him to eat again soon. (For any details on the surgery, you are going to have to email me). Of course, as any surgery would do, it has knocked Josh on his butt, and he is working on recovering from that. As it was laparoscopic, they have to expand the abdomen with air and that stretches muscles and causes quite a bit of pain afterwards. We are hoping that the NG tube can be removed today (we pray that it is out for good!!) I know that will help to lift Josh’s spirits, because that is the cause of much of his pain and discomfort.

Focus your prayers on: Getting and keeping the NG tube OUT!! Quick recovery from the surgery. Josh being able to eat, eat, eat (without problem). Successful chemotherapy.

Thanks for the prayers for Kevin; I just heard that he made it through the surgery just fine and that he got out of ICU yesterday!! That is so great to hear! Now we pray that he has a quick recovery.

Special thanks to Patty, Jeff, Sami and Nick for all of your help with the kiddies!!! You came at just the right time, and we all really appreciate it!

choosehope.com

Here is a list of suggestions to keep in mind, not all of them apply to our situation, but maybe you know someone else that it does apply to. This list is from Choose Hope, Inc

How Can I Help?

15 Helpful tips for family, friends and co-workers. by Chris McHugh

1. Sometimes flowers aren't the best. Patient's immune systems may be compromised and living plants, flowers, and Spanish moss are not allowed. Look for alternative ways to say you care. Choose Hope, Inc. (www.choosehope.com or 1-888-348-HOPE) has perfect gifts designed by patients for patients.

2. A "Healing Hands" shirt is a great way to show team support. Gather friends, family, co-workers, or even pets together. Using fabric paint, have everyone place their hand prints (or paw prints) on a T-shirt, sweatshirt, or denim shirt. Personalization can be added by each print with a sharpie or laundry marker. A perfect way for the patient to be surrounded by their loves ones on treatment days.

3. Losing hair is a hard thing...no doubt about it! Have a hat party and invite your friends to each wear a hat, party hardy, and leave the hat for your friend. Hats should range from unique to practical.

4. Keeping in touch is important. Send cards, notes, banners, kids' drawings, or any message of hope to show you care. I found receiving get well cards with the message "while you recover" to be very important in my healing.

5. Form a "Relay for Life" team. This can show great team support while giving the patient something fun to look forward to. Call 1-800-ACS-2345 for information on Relays in your community.

6. Remember the family with food and treats. Find out family dietary needs and have one person schedule meals. Supply a meal approximately every three days. It was great to have my kids jump in bed with me and be able to offer them a homemade treat.

7. Gift certificates to area fast food/restaurants surrounding the patient's clinic and hospital are very helpful.

8. Pretty new P.J.'s with front opening for IV access is essential. Throw in a pair of fuzzy slippers for added fun.

9. Cash is always helpful for miscellaneous family needs.

10. Themed gift boxes or baskets for the family are a great idea. For example: a movie basket filled with videos, video coupons, rootbeer, candy, popcorn, etc. is always fun.

11. Arrange for help with laundry and housecleaning. Church groups, or service groups, are always willing to help when needed. Your friend's job right now s to heal, not to be overwhelmed by day-to-day household chores.

12. Surprise slumber party! Make a date with your friend even if she is too tired to go out. Show up in jammies, cold cream and curlers. Insist she do the same. Sweep her off to a friend's house where you will eat junk food, play board games, and share many laughs.

13. Seek out positive survivor stories and share them often with your friend. She needs to know that 8 million Americans are LIVING with cancer today.

14. Don't assume the family needs or wants to be alone. Short visits can take the family's mind off of everday stress. Share laughs and make wonderful memories.

15. Stay connected. Nothing bothered me more than when I would hear "I kept tabs on you through so-and-so because I just didn't know what to say." Remember simply saying "I'm here and I care" is better than nothing at all.

"Throughout my cancer journey I've had numerous people ask "what can I do to help?" The above 15 suggestions are things that helped me when I needed a pick-me-up, and are passed on to hopefully help you do the same for someone in need."

Josh & More

Josh is still in the hospital, he is now back at Northwest. The NG tube was removed on Wednesday night, and things seem to be going okay without it. Josh is back on TPN feeding as of last night and he received another round of chemo last night. Day to day, things can be difficult to get through, but we are managing. Josh has what is called a PICC line and it is similar to the chest port because it stays in him and has two ports, but it is in his arm. This will probably be more of a temporary thing, and he will possibly get a chest port again in the future.

In case you are all wondering, Josh is NEVER alone in the hospital. We make sure that someone is there as an advocate and friend, etc… My mom has done an AWESOME job of staying with Josh every night. We are all very lucky that she doesn’t mind the semi-reclining hospital chair in place of a bed. Thanks Mom!! Bobbi (Gretchen’s mom) has also come to the rescue many times. She has been in town this week (down from Lake Havasu) and does a great job taking care of the kids and helping out around the house.

We just sent all of Josh’s information to a world-renowned surgeon in Washington, DC. His name is Dr. Sugarbaker. Hopefully in the future we will be meeting him and Josh will have surgery by him. He specializes in abdominal cancers and is highly skilled in this area. I have been in contact with others who have been through the surgery and some who are preparing for the surgery. One guy I have met is gearing up for surgery on the 18th of this month. Maybe you noticed his posting on the message board. His name is Kevin and his cancer is very similar to Josh’s. He and his wife Roni have been very helpful to me and the family. They have answered questions and shared their experiences. So, as you continue to pray for Josh and our family, please say a prayer for Kevin and Roni, especially this Wednesday (as Sugarbaker performs his surgery).

Oh yea, “Happy Valentine’s Day” :)

Update on the “A” Mountain Climb:

Thanks you so much to all of you who have agreed to participate!!! We have a team of over 50 people!! I am so looking forward to Climbing A Mountain with all of you. I will try to update you again on some more details later. As is stands now, plan to be at Pima Community College West Campus at 7:30am on Saturday, March 6th so that we can all meet as a team before the climb. Then we can meet again at the top for a team photograph. I will be getting the shirts a few days before the climb, so I might be able to get them to you ahead of time, otherwise you can get them from me that morning. As far as the shirts go, they are going to be awesome!! Avery special thanks to Sarah and Emmy for their wonderful efforts in helping me with the design. They are something to look forward to! :) We ended up ordering a few extras, so if you would still like to join us, let me know…we have some XL shirts, but they will still cost the $40. If that is too much, let me know…maybe we can work something out.

One step forward...

… and two steps back. Cancer sucks! It really does, and I am sure that many of you are already aware of that. This is one journey that I would not wish on anyone, but luckily we have a great support system, and each one of you reading this is a very important part of that, thank you.

Since Josh went to the hospital last Thursday night he has been off of TPN (tube-feeding) and he has been eating on his own. This was a major step forward for Josh and it was wonderful to see him eating. Because the infection was in his chest “port-a-cath” that had to be removed, in order to avoid spreading the infection further. It didn’t seem that that was going to be a problem since he was eating on his own. Unfortunately this did not last as long as we would have liked. He started having some stomach pains and we checked him back in to the hospital yesterday (Saturday). This time he is at TMC.

He went to TMC because he is having a laparoscopic procedure there tomorrow morning, so it would be easier not to have to move him. The surgery is going to give the doctors a better idea of the type of cancer that we are fighting. So, we look forward to the knowledge that will be gained.

Yesterday was a rough day overall. The pain Josh was experiencing is from a partial blockage in his small bowel (similar, or maybe the same, as the reason he was placed on the TPN in the first place). He is now on pain medication and is trying to stay as positive as he can with an NG tube (up his nose and into his stomach), which as you can imagine, is quite uncomfortable. It looks like he will be getting back on TPN to keep him nourished…I’ll have to update later once I know more.

We got some test results back on Wednesday, and that is what we consider to be our step forward. It indicated that the chemo therapy IS working, and the tumors ARE responding!! We are all very encouraged by this news. Due to all of these complications, he has been off chemo for 2 weeks, and we hope that he can start up again very soon.

One thing that we have realized from all of this is that prayer really does work. We are using it as a major tool in keeping us strong and in healing Josh. Thank you all so much for your prayers. Please, take a moment right now to say a prayer. Just stop reading for a second and say thank you (to your God, in any way that you are comfortable) and put in an extra request that Josh’s body and mind stay strong and that the doctors make the correct decisions.

Speaking of doctors, Josh has a great oncologist. His name is Dr. Rosenberg, he is a wonderful man in many ways. He really helped us this weekend and he has shown how much he truly cares about Josh by reaching out (even on his day off he called Gretchen 3 times to make sure that all was well and took the time to explains some things). Kudos to Gretchen on an awesome job as the sweet, yet demanding wife! 

Blood Donation

I've been getting questions about blood donation, so I have done my best to do some research on the subject.

Josh's oncologist said that we do not need to donate "in Josh's name" because it is important to simply keep the levels of blood in the bank high. So, really anyway that you donate will be great! Ways to donate:

Go to the United Blood Services webpage and book an appintment on-line: http://www.unitedbloodservices.org/index.asp

Donate through the American Red Cross by visiting this page: https://www.givelife.org
or by calling 1-800-GIVELIFE (1-800-448-3543)
or, if you are in Tucson, visit this webpage: http://www.tucson-redcross.org/GivingBlood/index.html

You can also donate at the many blood drives going on around town. I don't know of any personally, but if anyone knows of one, or would like to run one, let me know and I can get the information out to the webpage.

Don't forget to email us if you donate! Thanks!

Climb to Conquer Cancer

The American Cancer Society’s Climb to Conquer Cancer is coming up on Saturday, March 6 from 8am – 12pm, starting at Pima College West and ending at the top of “A” Mountain. This is non-competitive, it’s not a run, we can take our time. MARK YOUR CALENDARS!! We have decided to do this as a team. We would love to have everyone who can join us to do so. However, we have a close deadline!! I just found out about all of this recently, so I apologize for the short notice.

As a team, we get shirts printed up with our submitted design. If you want to be on the team AND RECEIVE THE PERSONALIZED SHIRT I need all of your registration information and money ($40) by THIS THURSDAY NIGHT (2/5/04). If you can’t get it to me by then, you can still be on the team and walk with us, only your t-shirt won’t be personalized, so don’t let the deadline deter you. In this case you can register anytime including the day of the race (day of the race registration fee is $45)

What you need to do to join us:
Email me: marisaallen@hotmail.com
With the following information:
Name, Home Address (street, city, state, zip), Telephone (day/night), Email, T-shirt Size (S,M,L,XL,XXL or Youth M, L), Are you a cancer survivor? (Yes/No)
I also need a check for $40 for adults and $10 for children under 12. I also need your signature.
Since this is a lot to get together in 2 days, I’m willing to work with you! I’m sure it will be ok if I cannot get everyone’s signature by Friday, but I do need the check. We can arrange to meet, or I can pick up a check or it can be mailed to me, dropped off at Josh’s house, or my house (I live in the Campbell/Glenn area). Please let me know what will work for you and leave me your phone number so that we can make arrangements.

If you cannot walk with us, don’t worry, you can still be involved. We will be taking donations, plus there is an opportunity to purchase a flag to honor Josh. The flags are placed along the walkway on top of A Mountain. They are $15 a piece. Email me if you would like more information about that, or about making a donation.
QUESTIONS?! Email me! (you can also talk to my mom or Gretchen)

He's Home!

Josh is home!! Yea! Turns out he had a Staph infection in his chest port. He’s been on antibiotics and they seem to be working! He’s been feeling great, and it’s good to be home.
Things to keep in your prayers:
That the insurance pays for everything without problems.
That the chemo shrinks the tumor.
That Josh stays healthy, and his blood counts stay within normal ranges.

Ups and Downs...

Well, we certainly have learned a lot since Josh’s diagnosis. One of the biggest things is that this is quite a roller coaster, highs and lows, good days and bad days. This past week was an “up” week. Josh was feeling good, he started eating solid foods! This is a big deal because it was the first real solid food Josh had since before Christmas. Also, thanks to the wonderful accommodations of the people at The Fountains, Josh was able to do a bit of work (thank you to all of you, you are a great support!!!). On Thursday the family went with some friends to the zoo (expect pictures soon) and they had a great time.

Unfortunately, we then had a “down” day. Turns out Josh has an infection, which is very common for people with lots of chemo and a chest port, etc…. He had a high fever so he checked into the hospital last night (Thursday night). The doctors and nurses were able to get everything stabilized and Josh was able to sleep well. His white blood counts and platelets were low, so he received a platelet transfusion (he didn’t receive blood, just the platelets) and his counts returned to normal (the white blood cells too). He is going to stay in the hospital again tonight and possibly another night, just to make sure everything stays stable. He can’t have any visitors (only immediate family) as a precaution, in case his blood counts go down again. I saw him this afternoon and he looked great! He got to play with Jake and Caily for a bit and that, of course, put a huge smile on his face.

So, now I’m going to put in my “plug” for blood (or plasma) donation. We just want to ask everyone to go out and donate. I’m sure some of you already do, and that is wonderful. We are learning first hand what a miracle it is to give and receive blood (and all of its contents). I also know that many people cannot give for various reasons, but if you can, please do so. If you would like, send me an email when you do so, so that we can thank you, and know how you are helping.

We love reading all of your posts. I print out each page and that way Josh and Gretchen can read them at their leisure. They are a wonderful, up-lifting inspiration. I know some of you are partial to the old fashioned "snail mail", so I don't want to leave you out! If you would like to know where to send mail to Josh, send me an email and let me know.

Thank You!

I just wanted to say "thanks" to all of you who have emailed and/or posted. (You may not get a response, but know that all of your kind words are greatly appreciated!)

I decided to create an update email account. So, if you want an email each time I post a new update (not including new pictures), click on the link on the right, "Receive Email Update" and send me your name and email address. I will create a list and send it out each time I update.

We all had a great weekend, Josh and Gretchen took the kids to the park on saturday and on sunday we all went to watch a little rugby. It was cold out, so we had to bundle up. I took a few pictures and I hope to get them on the page soon.
That's about all for now!

Chemotherapy

For anyone familiar with chemotherapy, I figured I would let you know the treatments that Josh is undergoing. He is currently receiving 4 different types, 3 through infusion and one as an oral pill. The infusions are called Carboplatin, Taxotere and Gemzar (he gets the first two on the same day once everyother week, and the third type one day in the opposite weeks). The oral pill is called Xeloda and is taken over 5 days. All of these types of chemo are for different things and combined the oncologist feels they will do their job. Tomorrow is another chemo day and he will be getting Gemzar. Unfortunatley last week his white blood counts were low and he now has to receive a shot 3x a week called Leukine.

As you can imagine, this is a lot for one person to take and it can be taxing. Fatigue has set in a bit, and he received hydration the other day to make sure he is fully hydrated. Overall though, Josh is looking good. He's a bit thinner than you may remember, but he is staying strong and his smile is still big.

Tomorrow is a big day because it is Gretchen's birthday!! yea! So, be sure and wish her a happy birthday!

Don't forget to check out the picture page, I hope to update it soon, once I get some more pics! If anyone has some pictures that you would like me to share, feel free to email them. Also, I have added the guestbook for comments, suggestions, well wishes, etc... Anything meant for Josh I will make sure he sees!

Diagnosis

Josh's diagnosis is mucinous adenocarcinoma originating in the appendix. However, it is possible that the appendix is not the primary, and the pathology reports are still being worked on to figure that out. If you want more detail as to the actual diagnosis, you can go ahead and send me a personal email (look under Links on the right side of the page).
As you may know, Josh currently has a central line. This is a catheter with 2 ports that come out of his chest and are connected to a vein behind the collar bone. This is used to get blood from Josh and to administer his chemotherapy. It is also his main source of nutrition. Josh currently is on a clear liquid diet (he has soup broth and drinks Boost, etc...). He receives what is called TPN, or Total Parenteral Nutrition. This is a large bag of liquid infused into him over a period of 15 hours (at night) and it gives him the essential vitamins along with 3000 calories. Gretchen, my mom, Crystal and I are familiar with setting all of that up, and 2 of us set it up in the evenings and Gretchen takes care of the morning routine...we have become quite the nurses, with Gretchen being the head nurse! :)

Welcome! READ THIS FIRST!

Hey everyone, welcome to Josh's update page. As Josh's sister, I decided that it would be easiest on everyone if I could post the basics of the situation on this site. I hope to keep you all updated on how Josh is doing, the types of treatment he is undergiong, etc...Hopefully this will help everyone to feel informed, as we know that you all care deeply. Thank you so much for your support and prayers, they are helping to keep Josh's spirits high.
Also...I've never had a weblog before, or anything, so you'll have to bear with me!