Most of you probably assumed that my lack of posting last night was due to lack of information and/or bad news. If you did you would be correct on both accounts.
They went down Julies throat yesterday and confirmed that she did have the infection in her heart and said that it would be 8 weeks more of treatment to cure it. Then shortly after that news the doctor consulted with his partner who had a different opinion at which time they came back and said they needed to discuss further and would have more of an answer/diagnosis today (Friday).
Today passed without too much info from anyone until around 3pm. The infectious disease doctor informed Julie that she did have infection in her heart and that it was treatable but it would be 6-8 weeks. Uh infectious disease doctor, thought we were done with that? How did we get back to this after 4 months in a hospital and someone else blood? Anyways no time for that. While Julie was on the phone sharing this info with me she took another call from the Parson village (her bungalow) notifying her that Judy needed to vacate the bungalow immediately as they needed it for another patient. Hell no!! I don’t pay weekly for that crap hole apartment so that they can kick us out at the drop of a hat. I pay for it just like a hotel (at close to the same rate) and that mofo is mine. Oh and did I mention that Julie is still in the ICU.
So Julie starts freaking out obviously. I advise her to call her nurse and have her (or him Travis) contact Forman or his assistant immediately. If she does not hear from them her job is to leave the hospital and go back to the bungalow to secure that from being taken away. If we get into the weekend nothing will happen till Monday and we need a plan. After we get off the phone she does her part and I email Forman. Judy calls me livid. I tell her to squat at the bungalow, and don’t give it up, I will pawn my kids off and come up tonight if necessary. She was prepped to unload on the staff with all she has (no coaching from me was necessary).
Well Forman emails me back, A few times. He assures me that Julie will be released tonight. The bungalow is ours as long as necessary. And the infection is on a leaflet of her heart valve. She is on the right antibiotics currently, her marrow is in full remission, and she is a “top priority” for him. Good news, we are on track.
Julie calls me back a little later and a little more calm. After Forman visited her it looks like the plan is for her to have 3-a-day clinicals over the weekend and then on Monday she should move to a 6am infusion with home nurse after that on a daily basis. She asked about getting back to having Frakes run point on her treatment so she could come home and he said that once her bowels and some other stuff leveled out she would be alright.
So basically we are cool for this weekend. I am going to make sure I am there this week when she has her appointment with Forman and we are going to figure out if she needs to be there for another 6-8 weeks or if we can transfer some of this BS back to San Diego.
I know it could be worse but dude how do we hit every possible bump in the road? City of Hope you don’t go crazy and blow up the joint.
I am very aware that myself and this blog have lost their spark of wit and humor and turned into this fact based sadness machine, but unfortunately that is the reality of what is happening now.
Julie is still in the hospital, in the ICU or ETC I believe, and is not scheduled to leave soon. Forman said that the bone marrow did not show any return of cancer and that she is 99.5% donor so those are positives. He also said that they seem to have her GvsH and other infection under control. But now they need to figure out what this bacteria infection is and treat that before she is released. Oh and the big kicker is they are sticking a tube or wire down Julies throat tomorrow to check her heart and make sure that the infection has not spread to there. As you may recall Julie has had heart issue like a heart attack and a tumor of sorts in the past and they are now again nervous of this blood born infection having gotten to her heart. Some things to consider and pray about for her 130 procedure tomorrow are as follows:
1. Julie is scared about having to have something shoved down her throat while she is conscious.2. If they find it has compromised her heart that will guarantee her another 6 weeks of treatment to rid her of the problem. That’s a big one folks, we do not want to see that happen.
If all goes well tomorrow and she goes 48hrs without a fever they will put her new pic line in on Friday and she will then return to the bungalow and begin her home nurse treatments.
So big day tomorrow. Lots of potential for great or grave news. Lets pray for no issues and some smooth sailing.
Apparently Julie was walking today and eating and doing better. Then she got a fever and is now back in the etc. She is running a temperature of 101 and it is reminiscent of last year when she would get a fever and then be hospitalized. Crazy how far she has come and yet we are still playing the same games. They are saying they just want to hold her for a few days again to monitor her, so lets see how that plays out. Otherwise she was supposed to be on the 3 times a day home nurse visit for infusions. Hopefully this will just be a hiccup again and we can get back on track again.
As Julie mentioned in her post she was admitted into the hospital due to her blood cultures coming back positive. She is still there but should be released tonight. Julie had her pic line taken out today and they put an IV in, she needs to do some more antibiotics and then will be allowed back to the bungalow after 8pm. After that she needs to return at 6am to put a new pic line in her other arm and receive her infusions. After that she should be getting a home nurse for the bungalow that will do all of her treatments there instead of the clinic. Of course that is scheduled for the next 2 weeks and seeing that today is day 90 it looks like Julie will be heading way beyond the 100 day stem cell transplant threshold. And that is the agenda.
Well long time no talk. I have been at the city of hope now for about 3
months and I have not been home for almost 4 since I went straight from Scripps to here. City of hope has been amazing, my doctor is beyond amazing and really truly cares about me. I have had many hiccups along my journey, and it has been much harder then I ever could have anticipated. At some points
I truly thought I was going to die. I still have good days and not so good days. Right now they found an infection in my blood so at 12:20 on Friday night I was re admitted into the hospital. I am getting a ton of antibiotics and fluids. My legs are still pretty week so my mom and I have been practicing the stairs and walking as much as I can stand to. It’s interesting going from running 3 miles a day to having to teach your legs to move and lift up stairs. My mom has been staying here with me for the last 3 months. I can’t tell you how lucky I am for her, this journey has been like one that no one could prepare you for, and I could not be doing it with out my mom. I continue to get antibiotics everyday and hoping that my body kicks into gear. Maybe if I get all the hiccups out of the way now it will all be good later. I want to say thank you and how much I appreciate all of you that have come to the City of Hope to donate blood or platelets. I know it is a long drive and I appreciate every cell that enters my body. We are currently trying to figure out what drugs are necessary and which one we can eliminate. To me that sounds like closer to going home. I’m hoping this hospital stay will be short and they fix the problem fast. I can not thank all of you enough for the constant prayers, donations, and help with my kids.
Much love and gratitude Julie
Got a text at 3am letting me know that Julie was running a temp and vomiting so she had to be taken to the ETC (emergency treatment center). Later in the morning Julie was not much better, a whole lot weaker, nothing really good to share. Finally around 4pm Judy let me know that Julie was back at the bungalow asleep. She had her bone marrow biopsy, hydration, antibiotics, nupagin, magnesium, potassium, micropungin, platelets, 2 bags of blood, and was exhausted. She is beaten down and beaten up. We are hoping that she can eat a little dinner tonight, get some good rest, and start tomorrow feeling better and move on forward.
All of this chaos happens while I’m just going through my life. Taking the kids to school, going to work, heading to the pumpkin patch tonight to play. It’s not right, it’s weird, and it needs to end.
(sorry forgot to post this)
I wanted to invite everyone to join us next Saturday Oct. 12th to do the Encinitas 5k at Moonlight Beach . Julie needs a pick me up and loves to jog as you know, her goal when this is all over is to do a half marathon so I thought if we all sign up I can make pink shirts that say “ Doing it for Julie.” We will be shooting videos to send to her and pictures to help lift her spirits and help motivate her. If you interested please register on the site oorganizer’s Website for the race. Go to http://www.moonlightbeachfest.com to register and pay your race fee. Meet the day of the race at the Moonlight sign on the corner to pick up your t-shirt I only have 50 t-shirts . Hope to see as many of you as we can!
(I will be running with my boyfriend Haven also)
Julie fainted and fell in the shower this morning. Her mom was not able to get her out so security had to come help remove her and get her to the emergency room at COH. Apparently her red blood count has continued to drop even though she has had transfusions daily, and the heat of the shower helped to make her faint. She is okay besides the obvious hit to her spirits, but I was able to talk with her this evening and she is back in the bungalow feeling “well”.
Tomorrow they will do another bone marrow biopsy to see what is going on with her production and look for lymphoma. She did have a PET scan that came back clear last week so we are hoping this does as well tomorrow.
Silver lining is that as bad as it was this morning it did not cause any more injury and she did not have to check in to the hospital. Just had to remain in ER until 6pm.
Just got home from a weekend extravaganza. I was lucky enough to have the opportunity to use my birthday as an excuse to take a weekend off for some time with Julie and the girls these last few days. I had been promising the girls since June that they would be able to stay with mom once she reached the bungalow, but as you can probably gather Julie’s stay in the bungalow has not exactly been all too pleasant and therefore not really suitable for housing two rugrats. So knowing that they can’t stay the girls keep pushing to stay up in a hotel and yada yada. Thus the weekend extravaganza. We got a hotel close to the hospital for two nights and just hung out with no agenda. My family came up to visit and we all just had a great time. Some much needed “down time” for myself and the girls.
Unfortunately as it goes Julie was not all too great on Saturday. She was in the clinic from morning until I believe 1 and was basically bed ridden from then on. We still all hung at the bungalow for a while but you could tell she did not feel great and us all clamoring around for too long becomes a burden. So we floated off and did our stuff while Julie rested. Sunday however Julie was much better. Shorter clinic and way “healthier”. She thinks it may be due to some of the drugs that they run every other day that drain her so much. Forman does not disagree since everything is so trial and error with her situation. So maybe if she can keep stable they will remove some drugs and she will feel “better” more regularly. Anyway Sunday the girls and I were able to bring Julie back to the hotel after clinic where she hung out with us in the room doing mostly nothing. I watched the Charger game, girls did whatever they do, we had some nerf gun fights, and yada yada. That lasted until the early evening and then we all went back to the bungalow and had dinner. Julie held up really well. We said good byes thinking this morning was school and took off. Of course being the rad dad that I am we never made it to school. Instead we spent the day at Disneyland carrying on the extravaganza and surprising the girls for being so good all the time. I think that they had fun.
As far as Julie goes she has gotten blood every day since sometime last week and that is not necessarily good. So not sure what is going on with that. Otherwise I am hoping that the visit helped her even marginally and we can start to see some more rapid progress.
Julie did not end up getting out of the hospital until 9pm last night due to infusions of IVIG and some other stuff. Forman even said that he wanted to keep her in a few days longer. Thankfully he allowed her to leave but only with the pretense that the slightest issue would put her back in a bed.
She was back at clinic bright and early this morning all the way till 3pm. She had to to get blood, platelets, hydration, and drugs. They wanted her to return at 11pm for more infusions but somehow she got them off of that. She does have to go twice a day until October 4th however so that sucks.
Otherwise not much awesomeness. Lots of clinic, not lots of seeming to be healing quickly and heading home. Day by day. One day at a time.