It’s been a week since you last heard from me and that is mostly due to the fact that there has not been too much to share and I have not been too keen on sharing. However we did make a trip up last Tuesday that was fantastic. I went up with the girls and Julie met us in the lobby completely unhooked from her tower of power, and accompanied by no one. Big step. She also got to hang out with us for over 3hrs unhooked and unaccompanied. No nurses coming to give some dose of something or other, no reason for her to need to return to her room, overall just a great visit. I left pretty excited about the strides she was making. Of course with her becoming so self aware and overall healthier, the time she is alone is becoming more difficult as she is starting to go stir crazy and getting more homesick. That being said her mom did visit a few times this week and stayed the night again yesterday so she has helped a ton and also has kept me in the loop as much as possible about Julies progress.
Today we were supposed to head up and relieve Judy as we did last Sunday to kind of overlap visits with Julie and have some nice time all together. This unfortunately was not what happened. I got a text early in the morning from Judy saying they are going to be doing a 4hr procedure on Julie to help reduce inflammation in her system and that her blood pressure and liver functions are running high. Basically she cannot leave the room to see us and we really cannot go hang out in her room. On top of which Julie was in a lot of pain currently so seeing us, although rewarding, would be difficult especially with the girls. We pushed back our arrival time while the girls and I still saddled up deciding to head to Orange to see my sister who just had her first baby girl on Friday. Very convenient too since she lives just about a half hour away from the COH. We hung out there with my sister, her husband, baby Anabelle, and my mom and dad just playing and chit chatting while I tried to lock something down with Judy. Sadly however Julies day just kept spiraling down. She had a blood transfusion, blood recycle, the central line through her groin, and possibly something else. She was just too sad and in too much pain to see us. So we stayed with the girls new little cousin and played till after dinner. We will try to head up again Tuesday at which point Julie should hopefully be feeling great deal better. From what I gather Julie is still on track with what should be transpiring and the current doctor on duty is being proactive with some of the things he is doing. So as far as bungalow release we are still working on eating enough and taking pills, but now the factor of high blood pressure and liver functions have been added. She’s gotta get healthy.
Julie has made it clear that I need to let everyone know how grateful she is for everything you have done and is almost ready to have visitors again just as soon as she can get back to a stable state of recovery. So thank you all and hopefully you can make some road trips to visit very shortly.
930pm, my kids are screaming at each other in bed, and I am finally home and finished with this ridiculous weekend. Lots of events going down over the last few days. Had a dress rehearsal for dance on Thursday that was overlapped by a wedding rehearsal the same night about half hour apart in go times and 30 miles apart with the addition of rush hour traffic in venue sites. We were successfully late to both of those events. Friday was nail salons, make up, and getting ready for Uncles Matt’s wedding which we partied at until 11pm. Saturday morning was bright and early so we could be off to a dance recital that kept us occupied from 11am-8pm. Then today we visited mom at COH from around 9am till about 9pm (well drive time is in there), and now we are doneskies.
As for the important stuff Julie has not made or, until today, had not made any headway in getting better since I last visited on Tuesday. Still no eating, not much better in the overall well being, and kind of just maintaining at a less than satisfactory level. She had to get a tube down her throat and up her butt on Friday to check for graft versus host issues. Turns out she does have some but it is not uncommon or reason for much concern. They are giving her some small doses of steroids and other drugs to treat that. Side note: the graft versus host is when her new immune system is over zealous and starts attacking too much good stuff, like a pot head in a 7-11. So needles to say she was not feeling well Friday and not really interested in communicating or feeding in to her brothers wedding that day. Same went for Saturday. Her mom visited and said Julie was not well at all. She was going to try and watch some of the recital but ended up having the shakes and going to sleep instead. Either way I caught the important stuff on video and filled her in. The bad news of all that was that she did not want the girls and I to come up today since she was feeling like crap. So being the sensitive guy that I am I told her to suck it and we were coming up anyway to shove some love down her throat whether she likes it or not.
We showed up this morning and overwhelmed her as I had anticipated. Her mom was still there being loving and nurturing. I was a little less sensitive and more in the role of a coach letting her know that enough time has passed and she needs to step up her game and get better now. Julie came out to the lobby with us for a bit until she became nauseous and needing to head back to her room. Once back to her room we agreed that this nausea was related to an empty stomach feeling from the lack of eating over the last 2/3 weeks and the now present steroids who demand some nutrition. So for the first time in over 2 weeks Julie threw down some plain rice and half a bowl of chicken and rice soup. She then sacked back up and headed to the lobby for a few more hours of torture. No diarrhea, no vomiting. Eventually we sent Dylan and Judy home while Pres and I stayed a bit longer. Once in the room Julie passed out and started snoring like a drunk on a Saturday night. I felt very pleased that she was so worn out and will most likely be on track to eating and supporting herself soon. After all she is not allowed to release to the bungalows until she is eating regularly and able to take pills so that they can unhook her from the 6-8 bags of drugs, food, and water they currently have running into her veins. Her blood counts are doing very well and maintaining high levels, now all she needs to do is get this eating thing on track and we are making forward progress.
So that’s the scoop. I’ll take the girls up again Tuesday and I expect her to be 5-10 times better than she was today. It’s go time.
Here’s some pics from the weekend:
Had a good trip to COH yesterday. Julie is doing much better. She does not seem to see it yet and understandably so, however she is looking much better and seems way more responsive than she has over the past two weeks. Unfortunately she still cannot keep food down and is losing it out of both ends but once that passes she should be on a solid road to recovery.
They unwrapped the pic line from her esophagus yesterday morning and her throat continues to be healing so those are good things. Her blood counts are also shooting up which is also positive. Basically Julie has felt so bad for so long that I think she is a little wrapped up in her own pain that she cannot see how much better she is doing. While I was there she was nauseous, she did throw up and have diarrhea, but she also for the first time in two weeks left her room and took a short stroll. She sat in the lobby on her floor with me. She actually carried on a normal, non drug induced feeling conversation. She didn’t look like a crack addict and I will make the bold statement of saying “things are getting better”.
Her mom is there today and confirmed the same results. I am not sure how this cycle of not eating is going to break but they are giving her nutrients through and IV so as long as she can continue to try and walk around and get back her life I think the rest will follow. Dr. Forman said the same. She is progressing well and looking good, just needs to start walking and getting her body working again.
I am sure that soon it will trigger that she is getting better and the results will start coming in faster than I can document them. Feeling really close to the end right now. I can see how close she is to being back to normal, it is right there close enough to touch. Very exciting.
Dear Julie’s Helpers-
Well the response to help the Kauffman’s has been over whelming. I can’t believe how fast and how many of you sent checks. It is just amazing! Thank you sooo much. I think for now we are good on the “Laundry Ladies” checks. But if you would still like to contribute to housecleaning or gift cards for food, groceries or fun things for the girls that would be great. Again thank you all so much for the continued love and support.
Julies counts are rising which is good and I think she feels marginally better but not the big steps I was hoping for this week. This is probably due to the fact that she has her pic line wrapped around her esophagus. Yep you read that correctly. Her pic line that goes through her arm is wrapped around her esophagus, literally choking her. Luckily they did an X-ray today to find that out since she was still in pain and they will try to repair that tonight or tomorrow by either replacing or rerouting the current one. Pure ridiculousness. On the bright her side throat looks like it is improving internally.
In blood bank news the turnout is as good as I had hopped for. I talked to the lady down there who said people are scheduling out nicely so that they have blood set aside for Julie. Apparently I was wrong and all the blood given is held for Julie until she no longer needs it then they use it for other patients through the bank. And seeing how Julie has had like 4 bags of platelets and 5 bags of blood over the last few days it appears that they are needed. So thank you again for going out and doing your part.
I am heading up again tomorrow and will hopefully have better news. Like I said her counts are up so if they can fix the line tonight or early tomorrow I am confident her reduction in pain should reflect in some better news. I’ll let you know.
Got to enjoy a long visit with Julie today and see firsthand what is going on with her in this stage of the transplant and I am here to tell you it is rough. She is struggling and in a lot of pain and discomfort. She told me multiple times today that she “feels like she is dying” and that she “is a stranger in her own body”. Not good stuff. She has not eaten since Wednesday I believe and since last night she has not been allowed to drink since she was scheduled for an endoscopy (tube down her throat) today to see what is going on. When I walked in the room today Julie was shivering as if she was cold, but she was not cold, she was shivering like a heroin addict going through withdrawals or detox. She was and is extremely uncomfortable, and seeing how a new immune system is emerging in her body it truly is as if she is being “reborn” or possibly coming off a long addiction to a gnarly drug. In addition to the other problems Julie was continuously, like an addict, swishing water in her mouth then spitting it out since she cannot drink it and her mouth is so painfully dry from the last round of chemo. Of course after a certain number of swishes Julie would painstakingly start to heave the slow dry heaves of vomit that happens when nothing is available until some small amount of bile would eventually emerge. This is what I witnessed the majority of the day. A continuous cycle of pain, attempts to relieve areas of discomfort, then more pain.
During this time of affection and tranquility Julie and I shared she would also intermittently clench her diaphragm in pain and begin to practice Lamaze breathing as the pain swelled up to what felt like her heart attack, or similar to an ice cube lodged in your esophagus but that is also burning the track as well. So obviously this extreme discomfort is what the endoscopy was scheduled for today and I will get to that in a second. On a positive note, and before I forget, Dr. Forman stopped in today and said that other than what is going on with her esophagus Julie is doing very well and he hopes that by Monday he should have a good picture of what her recovery cycle is going to look like. Solid.
The endoscopy: Julie was feeling miserable by the time 330 rolled around from the lack of food and water, constant pain and vomiting, as well as all the anxiety she had created during all of this. Heading in for this somewhat “routine” procedure was fairly intense. But head in for the procedure she did and the results were exciting. Originally there was fear that Julie had sores or ulcers in her stomach or esophagus that were bleeding and causing most of this pain. This of course was deduced from the fact that Julie had vomited blood. So if the endoscopy showed any such problems the plan was to cut them out or something like that. Well they did not find any such problem. They did find that Julie has esophagitis, which is basically a very inflamed esophagus, and they found some food lodged at the bottom of the line before the valve to her stomach. So they punched that blockage through, scrapped some tissue to study, and pulled out. Julie will not be allowed to eat until Monday since the inflammation and nastiness they found in her esophagus needs time to heal and they don’t want another item to become lodged due to how swollen it all is. But they did prescribe her some medicine to help heal that mess, as well as get out all the bile they found in her stomach that continues to rise up and cause much of this burning. Small victory but a great success.
So when I left tonight Julie was not 100% but I could see that she was feeling much better in regards to the direct pain caused by her swollen esophagus and food item lodged inside. This in my mind is awesome. Any relief she can get is a blessing from God. Still a long road from here but from the outside it looks like in the next few days Julie is going to start feeling the glorious uptick of recovery.
On a side note there has been a lot of response and appointments made for blood donations. Thank you all very much for being so quick to react. I should note that Julie is not going to run out of blood or platelets if you do not donate, however she is using resources from the COH bank so that is the reason for them to call me and see if we all could help replenish in honor of her. And honestly I think they are gonna be like “damn this Julie chic has a gang load of support”. Good job team!!
Unfortunately no new or better news yet. Julie is still in a great deal of pain, she is getting a lot of blood, she is not eating so they are feeding her through IV, and she is just patiently waiting till the moment she feels better again.
Not the reason for a post however.
I got a phone call today from the blood bank at the City of Hope, since they collect and provide all their own blood without relying on red cross or someone, who asked if I knew anyone who would like to donate blood or platelets for Julie. I said well I reckon I do. Over the past few years many people have approached me asking if they could donate to help, well this is the time. The COH has asked for volunteers and I am now putting it out to you. I understand that so many of you have done so much for us and we greatly appreciate it, but now I am personally asking you for a favor. If you can and are willing please call the number below to schedule a time you can donate. Julie is blood type “O” now so if you are not that I am not sure if they want your blood but they did say they would take your platelets.
Here is the number:
Just a note for everyone to please refrain from visiting Julie until I post that she is ready for visitors. She would like her privacy while she is enduring this stage of her fight.
Thank you for your understanding.
Still no phone call or face time yet, a few texts showing no real improvement. Lots of sickness and suffering from what I gather. That’s all the information I have right now. Her mom was up there today and said that she is very ill, ICU sick as she calls it, and that the nurse said it will be almost two weeks before noticeable improvement. Not the best news we have had. Got me thinking a bit today and reminiscing over old photos. We have been at this a long time now. I have so many photos that have been taken to send to Julie to show her the girls are okay and having fun while she is gone. Photos people have taken and sent to me to show that they are okay while we are both away. Photos that track the progression of their lives over the past 3 years. So amazing to see how they have grown and so saddening to think that Julie has been suffering and fighting through all these years, waiting for the day that she can happily be with her family in the photos that mark our lives. Lots of time has passed. Tomorrow marks the third full week that she has been in a hospital bed. Officially the longest she has been away from us and unable to at least sleep in the house between visits. Our recent 8 year anniversary marks the fact that just barely less than half our marriage has been spent dealing with this turmoil as well as the fact that half of Presley’s entire life and essentially all of Dylan’s has been spent in this state of uncertainty. It is so crazy to wrap your head around. I know it is almost over but I also know that Julie is in some of the worst she has faced this entire time.
On a lighter note the girls are doing well. Presley did catch Dylan’s bug except for P it lasted a bit longer and this morning she vomited a few times just to add to her misery. However after a delivery of crackers and Gatorade she was all good. We played at Kidsville for a few hours, had Subway for lunch, attempted to make balloon animals with a kit a friend sent us (mostly we had snakes and stick figures with eyes), had a water balloon fight (I totally won), and had sushi for dinner (sitting at the bar pimp status). Very good day. Very good few weeks overall. They are sad about mom being gone and consequently get sad about anytime I am gone as well but they are otherwise killing it. I am blessed to have them and blessed to be able to enjoy so much time with them. They will make some pretty rad women when they are all growed up.
So that is it. Just wanted you all to know we are still here. I don’t have a lot to share. Things are tough but not necessarily any tougher than they are for anyone else. Just different and worthy enough to merit a following apparently.
This video was after our balloon fight and before dinner. It should make you smile.
It happened, the transplant is complete. Stem cells finally went in starting at 10pm yesterday 7/12/2013. I went up with Presley early in the morning yesterday and lasted till just before 9pm before we had to pack up and head home, so we unfortunately did not get to celebrate mom’s new birthday. Still super excited about it though. We also found out yesterday that her donor is international, most likely from Europe, which is why the stem cells arrived so late. More interesting news is that they harvested more cells than was needed so half is now frozen just in case. Science and medicine is pretty crazy stuff. Must have been an expensive order to have blood drawn in Europe then flown over same day to California.
So that’s it. Now we wait for her to accept it and get better. Then she gets to move to the onsite campus, then she comes home, then she is all better.
When we were there yesterday she was feeling better than she had been all week which was nice for both her and us. She still could not really put down food but she was not vomiting and as sickly as she had been the previous days. She was still exhausted however, she was asleep when we arrived in the morning and fell asleep while we left to grab a bite for lunch. She also said that she has been basically ICU sick which is why she has been so unavailable. I told her to try and do better of keeping me as updated as possible going forward so we will see how that holds up.
As we drove home last night the text came at 10pm that the transplant had started. I replied then did not hear from her until 1245pm today. Sketchy start to our agreement. In her defense they did dope her up to get things rolling and now she is peeing out her butt rather than vomiting, so obviously its hard to keep lines of communication open when painfully sick. Better to have poopoo I guess, but still shitty (hahahaha). Not that you all need to know any of that but it can prove useful if you are heading up to visit in the next few days. If you do she needs toilet paper, softer toilet paper. The stuff they have there is John Wayne grade (rough, tough, and doesn’t take shit from anyone).
Anyway I am hoping that she starts to recover quickly and this will not be as devastating to her as the last round of chemo that left her dying for 4-5 days. Then we can start looking forward to the day she moves out. It’s coming soon. I can feel it. Get excited.