Prayers

It’s not looking good for Julie’s release. She is feeling discouraged, and she is asking for everyone to pray for her to help her feel better, get her to the bungalow, and raise her spirits.

Thank you.

Still in

Looks like they are going to keep Julie yet another day. She did not get out today obviously, and they are saying that her counts and ongoing diarrhea are the issues keeping her in confinement. Also looks like she has another bone marrow biopsy tomorrow which is actually standard procedure when 30 days out. Otherwise she seems to be doing very well and appears healthier. Hopefully it will all catch up quickly so she can get back to the bungalow. One step at a time I guess.

Ups and Downs, In’s and outs

Julie is doing much better right now but will have to stay in the hospital at least through the weekend. They are treating her with some antibiotics and keeping a close eye on her with the hopes of getting her back to the bungalow on Monday. It sucks but is unfortunately part of the process. She is still less than 50 days into the 100 day transplant process so these problems do occur. At least she feels good right now, that is what is important.

More Complications

So Monday was  super cool. Everyone was excited, Julie and her mom went and got some groceries and picked up like 26 prescriptions, things looked rad. Well the honeymoon has not lasted very long unfortunately. On Monday Julie said that her diarrhea has not been controlled yet and they were still trying to get to the bottom of that, her bottom, but that was mostly it. Then on Tuesday she had a temp of 102. She had to go across the lawn for blood work and check ups in the afternoon and when she was there it looked like they were going to keep her back at the hospital for the night. Luckily it was just a very long visit and she got back to the bungalow but as of this morning she is still running a temp over 101 and feeling horrible like when she was in the hospital.

So hopefully she is just adjusting to being off the lines and this will pass shortly so she can work on recovering back into a normal lifestyle. If I find out any more good or bad I will be sure to post.

BUNGALOW!!

JUST UNDER A WEEK IN SCRIPPS FOLLOWED BY 50 DAYS IN A BED AT THE CITY OF HOPE AND JULIE IS NOW, TODAY, MOVING OUT TO THE BUNGALOW. I AM WRITING IN ALL CAPS BECAUSE I AM YELLING WITH EXCITEMENT AND THIS IS HOW YOU EXPRESS THAT FEELING. SO HAPPY.

I have no more to say other than that. I have not wanted to write lately and you can tell from my last 5-10 posts that they have not been too exciting or informational. However my wifey is almost home and I am fired up. Well and football is starting, and I worked out the problems with my golf swing, and Presley had a great first day back to school, basically things are looking good.

Ahh it is a good day…..

From the boss

Jule wanted to impart some words. These are them words:

First of all I want to thank all of you for the support I have received from near or far. I feel every prayer and feel so very very blessed that I am surrounded by so many special people . This experience has definitely been the hardest of my journey so far. I received my stem-cell on July 12th so this is now considered my second birthday . I had no idea how hard process was going to be. For the most part I had handled scripps chemo with out too many issues but let me tell you this round almost killed me. I was puking non stop I could not stand in the shower, I was literally dying. You know you are sick when all you want to do is see your precious babies and even that’s too much. I am so blessed to be getting this second chance of life, I will never be able to look at life the same way again.
Last week I started to get a little crazy so my mom made the sacrifice to take a leave of absence from work to stay with me full time, and she has been amazing, my piece of heaven . I didn’t realize how hard it would be. I just have to remember 3 months is nothing for a lifetime. The good news is I’m slowly getting better. Max has been amazing with the girls and has really stepped it up. I am so very blessed from all the the people that have stepped in to help out. I apologize if I have not been in touch or returned calls.  I’ll get back to normal soon.

Dickie Do

Julie got her Dickie Do out on Tuesday night. That crazy penile looking thing that was hanging out of her groin for a week while they were doing the plasma transfers. This is great news since it is obviously a step closer to being well enough to leave the building. During our visit on Tuesday prior to her procedure she was very mobile and fairly active. She has been walking laps on her own and getting back into the swing of things slowly but surely. The doctors finally said that they were very concerned about her liver functions being so high but now it looks like it is all settling down on its own. With that Forman also said that it is looking good for Julie to be moving out to the bungalows on Monday. I hope that works out as it is Presley’s first day of school too and can give us a little bit of a milestone to work with. Pres and I are hoping that the bungalow is only like a two week stay now since the inpatient ended up being so long. So as soon as she is out of the bed we will start pushing that agenda.

All good news right now.

Not much to say

Another full day at the hospital for the family and it is looking like Julie will hit the 50 day mark before she moves out. 50 days in a hospital bed before she is able to get a decent, unbroken, night of sleep. On a positive note the 50 days has hopefully rid Julie of her disease, increased her lifespan, and will help her live life normally on a daily basis. She does look better and seems to be improving each time I see her. She is still getting blood and some other nonsense but according to her doctors and nurses it is normal for it to take some time for everything to catch up to her new system. Kidneys are a little whacky, stomach is still having issues, and so on, but there is no graft versus host so the solid white blood counts will eventually start to prevail and all will calm down shortly. At least that is what I understand.

So not much to say. She is still there. She is still getting better. She is still battling day in and out. And she will hopefully have cleared this hurdle by Tuesday which is our next visit.

 

A Little More Info

When we went to visit Julie yesterday I got a little more insight into what is going on as well as had a pretty solid visit. First of all I found out that the “blood recycle” they are doing in basically pulling out her plasma and then infusing newer, better, cleaner plasma. This is done through essentially a pic line in her groin, super gross. She has also continued to get blood and platelets pretty regularly which I suppose is normal to help her body in the process of starting over. Visually she seems to be coming around. A lot of her skin has shed off and her color is returning to normal so it is looking like her rebirth is moving along successfully. She is also allowed outside now so we got to wheel her around the site a bit which is a nice change from the lobby on the 6th floor or her room, especially since she has “hit a wall” (her words) from being pent up in a room for 25 days and in a hospital bed for like 37 days. I am hoping that the bungalow move is close and she will start to feel the relief of pressure and be ready to see friends and family again. Her mom is there full time now and will have to stay in her bungalow as a caretaker when she moves too so having a companion should help to get Julie emotionally stabilized. We go back again Sunday and are hoping that there is an outside chance we will be visiting a bungalow. Fingers crossed.