So what can I tell you? I am now officially as out of the loop as all of you and would feel more abreast of things if someone updated me with a blog. Julie and I talk a bit, there is some sporadic texting, a little Face Time, but not as frequently as we would like and not necessarily informative. What tends to happen is a few texts will go back and forth and then she will become ill or fall asleep and will go dark for hours, like 8-10 hours. For example yesterday was our Anniversary and we exchanged some “happy anniversary I love you” hoopla in the morning, then without really closing a conversation I did not hear from her again till the night. She is kind of in and out right now, lots of vomiting, little eating, all the bad stuff that goes along with being ill. And that is really all I can gather. Sometimes she is more coherent than others but she is overall facing some difficult days and it is hard for me to figure out what all is going on.
On our side over here we have been having a good time, lots of activities and stuff. Of course the girls still do not love that I am gone as much as I am. Dylan shows her discontent by letting her sitter know that she does not love them and wants the other sitter after a few days of the same person. She can be super sweet that way. Not to mention that she will also let them know she does not love them without make up on either which is always nice to hear. Same kid who smells food and drinks before tasting and just today threw an outright tantrum about taking the kind of Tylenol she likes because it is colored purple rather than clear. I should back that story up, but point is she’s crazy.
Story: Without mom home I sometimes miss the subtle clues displayed by my children. They have been acting out in different ways because of their sadness and I recently lumped that in when it was actually something different. Yesterday Dylan was temperamental and rebellious with the sitter, not wanting to be productive in dance class, throwing a tantrum while at the movie theater, complaining of her head hurting (big cue), and so on. Throughout the night she woke a few times for water, today she was more moody than normal and clingy on me. Finally she was complaining that her eyes hurt when I realized that I am an idiot and she is running a fever. Whatever I’m human. I tried to give her Tylenol but she was not having it cause it was purple. She was crazy, almost choking from trying to take it. So we went to CVS and bought clear Tylenol, also grape flavor, which she happily took and is doing fine. Errr. Even crappier is that I probably got her sick from our day at Sea World then the beach out front of Jakes after dinner on Tuesday. Most likely got her some germs from one of those places. Oh well it was worth it.
Basically all is good except that I am heading up to visit Julie tomorrow with Presley and if little Miss P catches whatever Dylan has she cannot visit mom. We will find out in the morning the status of that, and if all goes well will be there for the transplant. They are saying it may be 630 tomorrow night so if that is the case I might have to bring P back home and head back up but I won’t really know till tomorrow since Julie is not the most reliable source of information currently.
Otherwise stay tuned in
Today concludes a long road being the last day Julie will have to undergo chemotherapy. She has a few days of prepping, transplant on Friday, then it is full recovery from there. Small victories.
Made a trip out to see Mom today. Took the kids and my mom and dad, great visit. Julie is on the 6th floor now and each floor has a lobby so we got to just chill and run a muck all around that place without bothering staff or patients. Well for the most part. My parents and Presley got to see Julies room, see the pictures below, but Dylan was not able to due to age restrictions. Nonetheless we had a pretty great time especially since we started this journey with the impression that their would be no children visits from the time she arrived. We hoped for a longer stay but it just didn’t work out that way without being able to get Dylan into the room and Julie on diet restrictions not being able to eat outside food.
-Julie is in a very sterile and quarantined environment. She is not allowed to have any food from outside of the hospital kitchen and she again cannot have flowers or stuff like that. If you want to send her something or visit you’ll need to take that into account. They are essentially killing her immune system then trying to start a new one. The smallest of bacteria can do serious damage. The best thing you can provide would be your time. And from today I can attest that it helps. She looked better today and was not complaining about the pain while she was distracted by our chaos.
So Pres and I will head back up on Friday to hang out and support Mom during her transplant and second birthday, until then I think a few other friends are planning on visiting. Otherwise there is not too much to share.
Here are the room pics with one of the girls today:
Got some more blog stuff for you today. Julie is trucking along up in Duarte. She is still in a significant amount of pain unfortunately, still on steady morphine, and they still can’t seem to understand what could be causing all this nonsense. One doc said it could be start of arthritis and she may need back surgery in 20-30 years. Comforting. So who knows, Julie and I just think it is how her body responds to being so weak since she is way broken down and she has had back problems before when she has been ill. This is kind of similar except with leg pain and unable to contain.
In other news she had her pic line installed and her port removed so that is good news since the port was mostly a pain in the ass more than it was productive, and the pic should come out at the end of treatment giving Julie back a device free body after all of this. Chemo has been running and will until next week around Monday or Tuesday, then she is scheduled for transplant on Friday the 12th, at which time I will be present to support her. Super bummed on the no free Slurpee deal and now that I think of it she is going to get a second birthday right on top of our anniversary officially trumping any day that may be slightly in my favor, even if it is split.
The kids are cool. They miss mom and tell me a lot. They are holding up however, and 5 days into it I am still keeping the promise alive. Pres cried as I left for work tonight because she does not want be without me and mom. That is super tough to walk away from but she does fine once I am out, I called and talked to her just to confirm. They are just adjusting to how much I actually work since they have to be watched by someone other than mom or the grandparents. Lots of “please don’t leave Dad” when I have to leave. Anywho back to my promise. So far they have been to the children’s museum, dance classes, birthday party (another one tomorrow), and so on. After all their adventures yesterday I took them out for Golden Spoon and came home to host a fireworks show. Yes a show, in my street, even though they are illegal. I’m super cra cra. The show was pretty awesome too, like 45 minutes of excitement and Dylan watching from the inside of our car, haha. Today we got some patriotic nails at the salon, had lunch, went to the park, decided it was too hot, then spent a few hours at the pool. I’m at work tonight but they are off to visit friends and watch fireworks again tonight, real ones, before bed. Pretty decent few days so far. What what, Dad of the year 3 years running.
I almost forgot to mention that my parents are also coming to town and taking the girls to Sea World Saturday courtesy of some free tickets from a friend, followed by a visit to mom on Sunday since the doc said it would be good to go. It just keeps getting better people.
Otherwise that is about it. Lots of excitement, lots of sadness. If you get a chance please drive up to see Julie. Lots of sadness and boredom up in that area.
Here are a few pics:
Check off day 1.
Things did not go according to plan today, just as we planned it. Ambulance departure from Scripps was not until just before noon. Arrival comprised of some confused paramedics in a City of Hope. We got up to the room, 4215, and all came to a halt. Of course everyone at the City knew who Julie was and had studied up on her history, we just arrived too late to accomplish much. When we got there I was able to decorate her room, which is a huge corner room by the way, with some pictures and Hawaii themed wall hangings Judy provided. Julie was all worked up that I was gonna get in trouble. Bless her little rebel heart. So I finished decorating, unpacked the suitcase and we hung out.
Shortly after Julie ordered some food, it’s much better than Scripps too, much better, like edible type of food much better, and you can order as much as you like from 6am-645pm which is kind of cool. We had some nurses come through quite a lot changing tubing and bags, drawing some blood, filling out questionnaires, etc. We met one of the NP’s who will be circulating and she said that Julie is signed up for every possible activity until she denies it, like arts and crafts and stuff, so that makes me happy. She also said the pic line should be going in tomorrow morning as well and the port should be coming out shortly after. Oh and she will have to move up to the 6th floor after chemo to do the transplant.
Forman came by super late after I left but he said that it looks like Julie is going to be back on the original chemo plan that was supposed to be 5 days outpatient. Of course she cannot do it outpatient now that she is inpatient. Good news is that if that is the regimen then she will be starting transplant sooner and hopefully be released sooner. Plus it would be less devastating than the 11 day cycle.
So anyway lots going on. Not 100% sure about what all is going to go down and when but I am feeling good about having her there. They are for sure on their game.
So now it is just keeping that delicate balance of emotions stable between the girls and Julie. Hard to leave her there and hard to leave them here. Game on.
Great day and a tough day all wrapped into one, ending this crazy last visit to Scripps before a sendoff to the COH. Julie was in good spirits today as were the kids and for the most part myself. Luckily after a few days of what seemed to be unrelenting pain for Julie has suppressed finally today due to the addition of some steroid pushes yesterday. From early last week she was gradually and daily getting worse to the point of barely sleeping and causing the nurses and doctors to escalate her from norco to percucet to morphine then oxycoton. It appears that the steroids did the trick finally and allowed Julie to have, for all intensive purposes, a good last day here in Encinitas.
I know it has been a tough day for her, very emotional and surreal that her departure is finally upon us. I have been trying, or we have been trying, to prep the kids as much as possible and they seem to be excepting it well. I know that there are going to be some tough days and nights but I think we are ready to take this head on. We have our calender set to track the days until visitation and as I said I plan to make sure the girls have a great time so that the month flies by as fast as possible for them. Today was day one of that mission. I got them out of the house for a pool play date this morning before we went to visit mom for our, well there, last good byes. That way they burnt a little energy and could focus on mommy. We stayed for a few hours and good bye was difficult. Presley was much stronger than I thought, it hurt me much more than I anticipated, and I know it must have been devastating for Julie. Regardless the girls knew that we were going back over to their friends to play and BBQ so they were amped about that and able to focus on having some fun to help dull the pain. Kids had a great time at dinner, we stayed too late, played a ton and had a special event at the end that was so fitting for tonight. Our friends had a lantern that you launch into the sky like in the movie Rapunzel so you can make a wish and watch it until it burns out. Not sure if it was planned but the idea of letting the lantern go as well as making a special wish was so perfect. I think most of us had the same wish except for Dylan who did not keep it a secret and told me it was for candy. I mean I guess that is like #2 to Julie getting healed.
So now we are officially 3. We are ready to take this month head on and get closer to a life that once was. Tomorrow morning Julie is officially off. What was supposed to be a 7am departure will more likely be after 9am so that they can make sure a bed is available now that Julie is an inpatient transfer. I will be an ambulance chaser and make sure she is all set up with her amenities once she arrives. Then I come home and play house and Julie starts her getting better dance.
Also she is allowed to have visitors the whole time if you fancy a drive. The whole time she is there, just as long as you are not sick in the slightest. You can pop on in her room with a mask and gloves and hang out with the little lady.
Once again, here we go.
Best laid plans and some other catchy stuff I would say right now to sum up the fact that Julie’s sendoff to the COH has become very anticlimactic. If you recall Julie was originally going to be shipping out on 6/17 which sent us scrambling a little bit and trying to work out the details of Presley’s last week of school. That thankfully was changed to the 24th and tentatively set as an outpatient chemo treatment to begin with which meant even more time at home before isolation. I even scheduled this weekend off so that we could all go up and stay in Duarte to have a nice sendoff for mom as she embarked on her “deployment”. That changed also to 7/1. Still okay though since I had the weekend off we made plans to stay downtown and have a good time. Julie obviously hasn’t been feeling well so that got downgraded to some different activities and staying at home, but still a fun last weekend. Well now Julie is in the hospital and will have to remain there until Monday when she will take an ambulance ride up to the COH to start her journey there. Bogus. All for a good reason I am sure, things always work out just the way they are supposed to, so I am confident that this is for the best, just bogus for how we worked it all out. Julie is super bummed of course, but that too is good. No need for her to try and be strong anymore, this is the last step, she can be sad and cry through it all. It’s just tough to adjust to a change of dates again, especially when it is sprung on you that this last ER visit is the start of your big stay. No formal good byes, no kiss for the dogs and cat, no packing yourself, and so on.
The reason for her having to stay inpatient from now until completion is the same reasoning for admittance after her collapse. Essentially the clot on her heart is cause for concern and they want to monitor her. Everything is pretty good right now but if it were to break off and into her lungs it could cause major issues so they are trying to deter that. The problem that got all this rolling is the blood thinners she was shooting up with caused some internal bleeding in her stomach from and ulcer and in her intestines as well I believe. So now they are doing blood thinners through and IV and at a more controlled dose to hopefully contain the blood clot while not doing as much damage and causing blood loss. Therefore she needs to remain hooked up and monitored, being tested every 6 hours to make sure she is stable. All makes sense, still sucks.
Sooo since we are now on this last stage a little more rapidly than expected I am going to go ahead and kick off the “summer of George”. It sucks that Julie is in the hospital and we/I are going to visit her and hang out until she leaves, however the kids and I will not be sitting around the house all sad faced while she is gone. I am going to do my best to make this a rad summer for them so they don’t need to dwell on all the crappy stuff happening. We are going to treat this like a celebration of life and the fact that mommy is almost done. Play dates, beaches, pools, whatever, we are gonna party like it’s 1999. Then when Julie gets back and is feeling better we are gonna take a solid vacation to either Mexico, Hawaii, Disney World, or somewhere super fun. I have not figured that out yet but I definitely put away cash from the fundraiser (hopefully that’s cool with everyone) and we are using that to have some good old fashioned family fun. Hell we might even end up on a cross country trip to Wally World.
Julie is in the hospital until she is done with stem cell transplant=sucks
Kids are on break and we are gonna party=cool
Julie is gonna be done with all this stuff soon and we are gonna really party=wicked cool
Alright time to catch everyone up, lots of nonsense lately. Monday Julie went in for standard work ups. Had to get fluid, her liver functions were high, they did an ultra sound of her liver, liver was good. Standard Monday.
Through the weekend and currently Julie has seemed to steadily be getting worse. She seems weak, has extreme soreness in her legs, doesn’t sleep well, and so on. Not the way it should be when things should be doing better this far out from the last chemo treatment.
Today a bad thing happened. Julie took the girls to dance this morning and while Dylan was doing her thing Julie walked down with Pres to get some bagels. Around the time she paid for the bagels Julie fainted and fell, twice according to Presley. Then once she got helped up and into a chair she vomited on herself. Not good. Ambulance came, checked her out and said she was good to go. Julie signed a waiver saying she did not want to go to the hospital since she is stubborn and does not believe her previous heart attack and current condition merits it. Either way she got delivered to the emergency room by her step mom per Dr. Frakes orders.
The ER hooked her up, ran some tests and said overall she seemed well. Of course all the doctors got online and called for more work and shortly after Julie was admitted into a room upstairs.
Currently Julie is getting a few bags of blood since it appears that over the last few weeks her counts have declined significantly, which should be opposite while recovering from chemo. They are also going to run another liver ultra sound, dopler of her legs, echo, brain MRI, 2 brain cat scans (because of the fall), and a slew of blood testing. They are thinking that Julie may be bleeding internally since her counts have dropped and she is shooting up with the blood thinners.
So Presley got to see her mom take a spill, mom is back in the hospital, and now I gotta go to a city council meeting with my partners to potentially defend our bar against crazed citizens trying to implement more restrictions.
How was your day? (don’t answer that, it’s rhetorical)
She passed the test and made it out. Of course that was after sitting in the ER for hours, finally testing, then waiting for the results. All of which seemed could have waited until Saturday morning. Either way she passed and got home right around 1am. Super solid day. But, it could mean that next week may be fairly cruise for us. There is an appointment with Frakes at 83o Monday morning so we won’t count our ducks until after that.
Also I am not sure if you picked up on the last post about Julie’s new start on life and a free Slurpee. What I was implying was the fact that the transplant is like a whole new system for Julie so it is like a do over or or rebirth. Secondly it was supposed to be on 7/11 which is the day the the store 7-11 gives away free Slurpee’s. I’m gonna guess not everyone knew that. Also gonna guess that you did not know that if you download the 7-11 app on your smart phone there is a coupon for a free pint of ice cream (if that has not expired yet). Moral of the story? Pay attention. You never know when I’m going to drop some serious Martha Stewart insider trainer tips here. It’s a win for everyone.