Long time, no post

Honestly it has been refreshing not needed to document all of the chaos that has become our lives over these past four years, and I am happy to say that other than some recent issues things have been well. Yet here I am four months since my last post writing these words. Maybe it is due to all the boring and self indulging blogs that are out there in the internet world just begging for readers and likes. Maybe I am one of those desperate writers. Maybe you all miss the joy and tears I bring. Maybe I am just an over confident windbag (well that’s actually pretty accurate). Maybe it is none of the above.

Truth is that we have been gearing up for our second annual Swings for Julie golf tournament and that process has created some awareness that not everyone who has who has followed our progress all of this time really has any idea what we are up to these days. Also some of the people I am soliciting for help with donations and partnership have recommended that I open my big mouth again and feed all you baby birds out there. Well here are your worms.

January: I brought the flu home. Bad flu. Flu that lasted like literally four weeks in the house. Vomiting, missing school, other things associated with the flu, never ending coughing throughout the night, etc. I brought that home. In hindsight I should have gotten a flu shot, which I did, in February, after the damage was done,  AND for the first time since I was in the Marine Corps 14yrs ago. Bad Max. So of course this attacked Julie the worst, causing increased doctor visits, added doctors, pinkeye, overpriced inhalers, sleepless nights, and so on. You get the picture, I screwed up. Anyhoozle that was a large set back but all in all did not create any major problems, oh well there was actually an emergency room visit due to fever but it didn’t last over night. Hard to remember now. Of course the 12 different bills that arrive from that visit are a friendly reminder. I think I am off track……..

February: See above. Later in the month things seemed to get back to normal.

Julie has been active and getting stronger since her return. Coffee dates, walks, dog walks, taking girls to school. Life has been normal. Somehow we adopted another cat. We do things, normal people things. The kids are super happy. Stuff.

March: Julie started to seem to be getting “sick”. Not the flu, not like we get sick, but Julie sick, weird sick. She started being a little more tired, her eyes bothered her, itchy, puffy, red. We thought maybe pinkeye again and used some drops. That didn’t work and other things started appearing. Her head became very itchy, then she started to develop hives on her face, then everywhere, then her eyes started getting worse. Like I said, weird sick. She did some Google nursing, emailed Forman about the possibility of having allergies now with the new immune system, saw Frakes, nothing seemed to click. After about a week of the issue being full blown we kind of thought it must be GvH (graft vs. host), her immune system not playing nice. She is the host, the immune system was graft from the donor stem cells. This was a scary thought and a little depressing for Julie as all of our previous experiences with any adverse conditions meant hospital stays, probes, tests, removal of organs, bad things. So that was/is going on.

Yesterday, Monday 3.31, Julie had a scheduled appointment with Dr. Forman at which point she was quickly diagnosed with GvH. Thankfully this is not crazy unheard of nor that uncommon during the initial year after transplant. Julie had been tapering off drugs and immune suppressants and this kind of happened. So they reassigned some new drugs to squash the issue and they go back to monitoring closely. Frakes for IVIG Friday, back to COH on Monday, busy, monitored, drugs. As of today she is unfortunately not seeing much relief, she actually had to get in and see her eye doctor as her eyes burn constantly and she is unable to open them or see more than a few feet in front of her. The eye lady scrapped some membrane off of her eye and said under her eyelid/s is scratched. The doc prescribed some additional drops and contacts that will hopefully help with that. The goal is to have a substantial amount of relief by tomorrow or Thursday at the latest.

So that is where we stand now. Pretty crappy hiccup but just part of the process of accepting a new immune system. It’s not cancer and that’s cool.

Now if you are still reading consider this next part like an add on Facebook.

If you would like to get involved with the golf tournament we are doing it Tuesday 4/29. There is room for players, hole sponsors, and prizes for the event are greatly appreciated. This year we are giving the money back to Dr. Forman’s department at the City of Hope to help them continue to save lives and families as they have done for ours. We are truly grateful for him and his team as we are for all of you. www.swingsforjulie.eventbrite.com

I hope you feel more informed.

 

 

What the happs is

So there is obviously a decent amount of readers on this blog who do not have direct contact with Julie or I and are probably a little curious as to what the happs is. Therefore I would like to inform you what the happs actually is.

Since Julie has been home we have been fairly reclusive while we all readjust and she slowly works her way back into the swing of things, all of which has been going very well. Julie was able to get up the stairs her first day back and has been sleeping at home ever since. She has had weekly and some bi-weekly appointments with her oncologist, and only one with her heart doc. As of today she has been showing great progress. Blood counts are solid (has not needed and transfusion yet), daily progress and improvement continues, hair is growing back, so far no hiccups. She did need hydration one day because she was experiencing some light headed issues but they didn’t know if it was due to the leaky valve in her heart, another heart type issue, hydration, or what. Still like I said continued improvement and not the crazy doctor and hospital daily chaos we used to have be so routine.

Yesterday Julie had to head up to the COH for blood work, echo of her heart, and appointment with Forman. All good results from that. We are still waiting for a more in depth read of the echo but according to Julie he did not seem concerned with anything. She does still have some “cmv” virus (I believe), so he needs to figure out some treatment for that, but otherwise she is able to finish her home infusions this week, lower some of her immune suppressant drugs, and keep leaning towards weening off all this nonsense. On the 30th she has to go up to see him again and get another PET scan after which she can remove the pic line she has had for so long now. Again progress towards no drugs, no lines, no disease.

So like I said all good stuff. Forman gave Julie the okay to drive so we are going to start practicing that soon and she is looking like we are very close to not needing someone to “watch” her while I am away at work.

I am hopeful I will be able to end this blog soon due to Julies full recovery and renewed health but I will, for the sake of all of you, keep a post or two going on her progress as we hit any milestones.

That’s the Happs

Touchdown!!

She is home. Arrived around 2pm today. She is in remission and cleared to be under Dr. Frakes care. Lots of info that could probably be shared but most importantly is that Forman decided that everything is in a neat and tidy order and beginning Monday morning Julie can return to Dr. Frakes until she is off the hook from that.

Other than the obviously exciting news of being home, Julie did say that Forman just told her that his panel was not all on board with her undergoing a stem cell transplant as they were not as confident that it would work for her as her situation is so rare and somewhat untreatable. So that is pretty crazy and scary.

Happy she is home and getting better.

The End…..for now.

Getting closer

Good appointment today. Forman said the Julies bone marrow showed that she is now 100% donor and her brain MRI looked good. Unfortunately his staff did not gather all the test results he needed so there is still some things he needs to go over before he feels comfortable releasing Julie back to Dr. Frakes care. Therefore she has another appointment tomorrow at 5pm to hopefully firm up any loose ends like how her nutrafils are now apparently lower than they have ever been. He is guessing it is an antibiotic reaction but Forman does not want to leave anything open ended which we are all cool with especially this far into this nonsense. So one more appointment tomorrow that will confirm all i’s are dotted and t’s are crossed and we should be getting a time or date of release.

Still all looking very good so far.

And I should mention that Julie wants to surprise the girls so if you see them please do not mention to them that you are excited mommy is coming home.

Thanks I appreciate it =).

It looks like we are days away

Julie had her bone marrow biopsy last Tuesday and a brain MRI on Friday. She also met with Forman on Tuesday who conducted the biopsy as well as their weekly appointment. He seemed very optimistic about Julies progress, her blood counts, overall health, and stability. The words from his mouth were that she should be able to go home next week. As in what is now this week, which starts tomorrow, Monday. He said he would start the discharge process and arrange for all infusions to be home infusions to make it possible for her to leave. Of course Julie needs to see him tomorrow to get the results from her biopsy and MRI but if those seem all good she should be heading home shortly after that.

So I don’t have a definite confirmation but it is looking like that will come after her appointment tomorrow. Super exciting stuff. Julie is actually coming home. Kind  of hard to believe after all this but I think it is finally here.

Still Waiting

Another solid visit with Julie. She had a short infusion this morning. We came up and went out to lunch. She did another self infusion as we sat at the park. We went to dinner. I helped give her a bath and then the girls. She did another self infusion tonight. And that was it. Things seem relatively calm.

Julie has a bone marrow biopsy this week and we are just anxiously awaiting Forman to say that she is stable and give a return home date.

If we find out I will post it.

Otherwise she is progressing well. Negative test results last week. Less blood being given regularly, and she is slowly getting stronger.

Day 100

Today was a huge day. 100 days from transplant. First time that Julie was allowed out without a mask on. The first time she was allowed to eat food that was not heated to a certain temperature and/or eat food that was not packaged. Big day for all of us. Big day for Judy who has had to monitor and care for Julie day in and day out since mid August. Today marks the first day Julie can start to reintroduce back into society. We actually went out for lunch, went to toys r us, and kind of cruised around without too much hanging over our heads. It was pretty nice. Julie was decently worn out after a couple of hours but it was still pretty cool.

Looking to hear some good news over the next few days.

Staying Ahead

Julie still appears to be improving. Her counts dropped a little today but not so much as to make it necessary for her to receive blood. They also took her off one of her antibiotics so that helps to reduce to time and amount of drugs she is on. All good stuff people. Everything seems to be progressing the way it should. Like I said previously, Sunday is day 100, and even though Dr. Forman would not give a date of release Julie is showing the signs that he requested for him to be comfortable releasing her into Dr. Frakes care. I think that without becoming overly hopeful Julie could be realistically coming home shortly.

As far as my personal war on lice I think we have successfully broken the cycle and are currently winning this fight. We are combing hair, washing constantly, and staying ahead of those little bastards so they cannot reproduce. It’s a pain in the butt, but like anything else we can make it routine for a few weeks and ensure that we rid ourselves completely of the pesky little blood suckers.

Oh by the way

Julie did end up having to get blood today but not platelets so that is still a positive day. Oh and both the girls have lice. Yep lice. Just when you think things are on the up and up you find yourself standing naked with your children all looking in the mirror at the weird orange lotion we put in our hair. All while every bed sheet and pillow case plus article of clothing is being washed. Realistically not as bad as I thought it was going to be, but seriously, wtf. We might not be able to go up and see Julie now cause of this “outbreak” and that sucks. And combing little bugs out of your kids hair is pretty nasty. So just remember life still happens regardless of how busy or difficult you may think it is.

Shout it from the rooftops

We have officially had our first few days of good news without the typical onslaught of bad news and complications. Julie had to do her 3 a day clinic visits this weekend in order to obtain her release so that was difficult and time consuming, but totally worth it. I visited her Sunday around 11 when she had just finished her 6am appointment, she told me that her evening one from Saturday ended at midnight, I then took her to the next one at 2pm which lasted until 4, then she went back at 9pm. Lots of in and outs but remarkably she seemed happy, healthy, and pretty normal. We walked to and from clinic, she went to the grocery store with me, and made some dinner. It was a refreshingly new way to spend the day even with the appointments.

Monday she was able to start her home care so the clinic was only a morning visit and she could self administer from there on for the rest of the day. She has been doing that today as well and today marks the fourth day of not receiving blood. Her platelets have actually risen. Of course her red counts have dropped daily but they are still above the threshold of needing a transfusion so maybe tomorrow they will stay stable or even improve. All I know is not getting blood since Friday, only having to go to the clinic once a day, and hitting day 100 this Sunday are signs of dramatic forward progress. I am hoping this is truly a sign that Julie is getting close to being able to come home and finish any necessary treatments with Dr. Frakes down here.

Finally some good news.