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.