Things Change

Once again things change rapidly and we just follow along with the chaos.

Yesterday Julie went to see Frakes at 830 to say wassup and that ended up turning into a shot of nupagin along with some hydration. By 1230 she returned home stoked about missing the morning and having swallowed a ton of news. In that short time at the office a call came from the COH letting Julie know that she was checking in on Saturday, this Saturday, like tomorrow, well was two days away when the news was passed along, but either way Saturday 6/22. This was of course shocking. Not for long though. Later a call came that said a heart MRI had to be done by the end of the day because the results would determine if they could proceed on Saturday, even though everyone had cleared Julie to head up regardless of what the crap on her heart is. Oh and it got bumped up to Saturday because the regimen had changed and was now an 11 day inpatient chemo rather than the outpatient or 7 day round.

Some scrambling happened, a few more phone calls, and by 445 the heart MRI was scheduled for Friday at 1030am and COH said that check in would now be Sunday 6/30. Roller Coaster. Everything seemed satisfactory now, donor was once again lined up, and Julie was set to get a new start on life and a free Slurpee on 7/11.

That all changed too. Now check in is Monday 7/1 and the MRI moved to 3pm today. So again this morning Julie popped in to the oncologist at 830 for some blood work and hydration only to return home around 1130, just in time to take the girls in for haircuts at noon. Right after that Julie bounced to head down to La Jolla for an MRI around 215 and promptly returned from that at 615. Sweet day and not over either.

At the forever MRI a cardiologist stayed present with the techs monitoring the whole scan. Right after he called Frakes who in turn called Julie. Good news is the thing in her heart is a blood clot of sorts. Bad news is there is fear of it breaking up and moving into her lungs causing issues. Oh and I don’t think I mentioned but Julies liver functions are high again, that’s why the hydration, just FYI. So Frakes told Julie she has to go to the ER tonight to conduct some tests that if she does not pass will require her to stay for who knows how long. Really hoping she passes.

Between the MRI and leaving for the ER testing we were able to take the girls out for sushi and ice cream to celebrate Presley finishing kindergarten and having a stellar report card. So that was nice.

Now Julie is gone, I’m finishing this nonsense, and then heading to work. What a life we live.

 

A Heavy Heart

So I had to wait for a few days to get all our ducks circled up…cross our i’s and dot our t’s…..well you get it, I had to figure out what the plan was.

Nothing major has happened or changed since the mass was found on Julies heart. Monday morning she visited Frakes then went and had and ultrasound of her port. That was all good and clear. Tuesday she had an eye appointment, those bad boys are looking better, followed by another ultrasound of her heart and culminating with a dental exam and cleaning. Teeth all good as well.

Today she visited her heart guy McGinty to follow up on the two ultrasounds. He said he cannot say for sure what the thingy is. It has not grown or shrunk and is on the right side of her heart which is better than her left side is basically what was learned. For now it looks like Julie will stay the course. She needs to keep needling herself with the blood thinner shots in the hopes that this is a clot and will work itself out. However if it is not a clot that is what the chemo and stem cell transplant are for so that would answer that. Those are the results

Also it looks like the start date next week will be Tuesday or Wednesday but will be inpatient now so that’s kind of a bummer. Good news that it is all happening but still sucky that the reality of being gone is only a few days away.

Stay tuned

 

 

 

The hits keep on coming

Well no good deed goes unpunished and apparently no good news comes without some bad. Today was supposed to be the last testing before heading off to the COH and before about two hours ago we were reveling in that.

All Julie had to do was turn in a giant jug of piss, have an ekg and a heart ultrasound today to finalize her prep for the transplant scheduled for the 24th. Dylan and I dropped her off to do said tasks, hung out at the park, then picked mom back up around 2hrs later. Everything seemed good to go. Until the heart specialist called a few hours later to notify Julie that they found something in her heart that could be a tumor or blood clot. Hard to decipher which. Super sweet news. She is scheduled to see him next week so he will hopefully have more of a clear diagnosis on that, but until then she needs to be on blood thinners, treating it as a clot. Of course the oncologist called right after the heart doc to have Julie come in to the office for a pow wow. She went in and discussed a few things, gave herself a shot in the stomach, and was sent home with a few more shots to give herself daily. Then she needs to go back and see Frakes on Monday morning.

Julie is currently freaking out. Obviously. She is not doing so well with this news so close to finishing her journey. So far the heart doc and oncologist think that regardless of what is going on the transplant should still remain as scheduled. Personally I think this is not some gnarly tumor but more of a blood clot like she keeps encountering in her port that is causing it to be hard to access. Of course I am not a doctor but I like to believe I am right the majority of the time. Because I am.

For now we need Julie to calm down cause this is not going to be an issue. I’m sure of it. Unfortunately, however, these are the things we have to face because Julie has a serious illness and bad things are going to happen. This is why they are constantly testing her and sending her away for repair, to end this madness.

Say your prayers. Momma needs some peace.

 

 

Marching Orders

Wow what a big day today. Lots of information, talked to a few people, and honestly got some relatively exciting news.

Showed up at the COH around noon today for a meeting with our social worker. She was supposed to guide us through what we should expect over the next few months, give us some contacts and resources, and generally ease some of our transition. Well she did not do all of that successfully but she did get us hooked up more than we were and added a name to our list. After that we had some blood work, well Julie did, followed by a meeting with Dr. Forman as well as our nurse coordinator, then topped it all off with a bone marrow biopsy and some more blood work before we left.

None of that is either exciting or even informative. However what we got from Forman and the coordinator, Kia, was very cool.

-First off it looks like Julies donor will be confirmed that he is good to go by tomorrow. It is a he, he is 30, and he is O+ which is what Julies blood type will now become.

-Secondly Julie is scheduled to begin the process on Monday 6/24, and now it looks like that process will start with 5 days of outpatient chemo. That is if Forman sticks to what he proposed today. The 5 days will consist of Julie driving up to the COH Monday-Friday for about an hour of infusion, then driving back home. Friday she will also have to have a pic line put in and then on Saturday she will be admitted to the hospital.

-From Saturday on she will start some more intense chemo, a day or two of immune suppression and prep work, then have the stem cell transplant. From the check in Saturday until completion Julie should be inpatient for about 3 weeks. During that time she cannot see the kids, nor can  she leave her room, however she can have visitors at any time as long as they are not sick. Not even remotely sick.

-Then it gets a little better. After she is out of the hospital she moves into the bungalows which was anticipated to be a 2 month stay. Well now it sounds like it can be as short as a one month stay if Julie is stable and progressing soundly. Since Dr. Frakes and Forman can work together he is comfortable releasing Julie to Frakes with once a week visits to him at the COH.

So basically this is all fantastic news! If everything goes well and according to plan Julie might be gone only 7 weeks total which is amazing since a transplant is roughly a 100 day process. Essentially from the beginning of summer break for Presley until right before the new school year begins Julie will be gone. Seriously perfect timing. I’m a little excited because this is like the first time things have seemed to fall into place so smoothly.

This would be a good time to pray that all goes as I just proposed it because that could mean a semi-normal life for us by September.

On a side note I thought it was pretty cool that the process of how they pull stem cells from the donor is like a standard blood draw. They hook an IV into each arm. Pull blood from one arm, run it through a machine, withdraw the stem cells, then send the remaining blood back in through the other arm. It’s like a 6hr process but sounds wicked cool.

And those are our marching orders.

Today. Not to be confused with yesterday

Here is your piggyback post:

Went to see Dr. Frakes at 10am this morning to get the results of testing and any last information needed before going to the COH on Tuesday to see Dr. Forman. All in all the meeting was good. Chest x-ray, PET, and brain MRI all looked stable or improved. Julie still not feeling well today laid on the bed during the meeting. Frakes did some examining, we all decided that it is most likely due to the chemo Tuesday that is bringing Julie down, especially since it seems to reflect the way she felt after having similar chemo last time. We discussed the process of leaving for a few months and the difficulties in that for all involved. Frakes was amazing, her and Julie hugged and cried, very emotional and supportive. We also got Julie to agree to some medication to help with all the anxiety and stress she is feeling. Not sure what exactly but I think it is a pill form of Jack Daniels. I’ll have to research that further. Then we decided to give Julie some more fluid since on top of not feeling well her heart still seems to be racing, she gets light headed, and all that other stuff that has been happening. Dehydration types of symptoms based on the negative results of all tests and blood work.

I left her there for hydration, they ended up doing cultures from her arm and her port to compare samples, some other things happened and basically she did not leave the office till 430. Wowzer, what a day for her. She is now even more exhausted and heading home to lay down for the night I would assume. I’m a little worn out too and pretty perturbed at the moment, also ready to head home. I took my jeans in to get hemmed the other day and they did it too short so it’s really irking me. Can’t seem to get over it. That’s what I’m perturbed about. In case you didn’t catch that.

Okay that’s all. Julie feels like crap but if it is from the drugs she will hopefully be feeling better after the weekend. My jeans were like $25 from costco so I can suck it up too. With a little mutual support we will make it through.

Have a pleasant weekend.

Long few days

It has turned out to be a long couple of days. It’s now Thursday night, but after the email blast deadline so you will probably end up reading this Friday night and possibly with another post piggy backed based on what our meeting brings tomorrow. Anyway it has been a long few days.

Julie of course got sick from Dylan, or Presley, or the world, well actually probably just from Dylan. So strap that on top of having chemo recently, anxiety and stress about leaving, maybe mix in some minor depression and things get tough. Essentially Julie was in bed from late morning Wednesday until I left for work today (Thursday) around 430. Like I said she doesn’t feel well but also she is for sure all wrapped up in how everything is closing in so fast around her.

We got the necessary tests done in between nappy time. Wednesday morning Julie checked in at Scripps at 7am to get her PET scan. I should add that even though Presley was freaking out about Julie leaving in the morning, when I took her to school she was all good and went into class sans tears. Just proving my theory that out of sight out of mind can be easier. Sometimes. The constant unknown and coming/going is what makes it so tough for the little trooper. Anyway back to the script. After the scan Julie pretty much called it a day. I mean she took care of the girls until I got home from work but when I walked in the door her head hit the pillow and she did not even wake up the next morning to get Pres off to school. She got up a bit later for her brain MRI, chest xray, and ultra sound. After those were done I took her home and she was on the couch mostly passed out until a little after P got home from school.

Look we all get sick, we all get tired, we all don’t get cancer along with that too so obviously I get it. I am just saying that this lady is worn out. Taking the long route to prove a short point.

Tomorrow we meet with Frakes in the morning to get any news that we need. From the wet reads it looks like everything seems to be doing better. Still a spot in the calf but otherwise all clearing up.

If there is any new items to pass after the meeting I will share. If not we are still on the same track with some lung testing Monday then on Tuesday at COH for some meetings, blood work, and a bone marrow biopsy.

Getting close to the end y’all.

I hope

 

 

 

 

Anxiety

Got through the weekend pretty successfully. Probably had a lot to do with the 4 day steroid regimen that Julie was on but who cares, it was nice. Of course my folks came to town and the girls ended up getting sick so as always there is never a perfect scenario. Presley had what seemed to be just a little passing cold but Dylan got the whole coughing, croupy, lung thing. Had to take her in for an appointment on Sunday morning. That worked out well, we paid $100 for some face mask breathing treatment thing and then some azithromyican as a safety precaution due to Julies situation. I say it worked well because it did not work well. I am revisiting my sarcasm. The mask thing we can kind of use cause it’s quick and forces her to breathe it, however the medicine tastes horrible, Julie and I both tried, and we can barely get any down Dylan’s throat. So as of today the sickness still stands. Whateves, it will pass. My kids have never really taken the antibiotics we try to give them.

In the world of cancer Julie is feeling the pressure lately. On Monday she was going in for just a standard blood draw that ended up turning into a bag of saline and some potassium. All the while they scheduled more blood and testing for this morning and her IT (spinal chemo). So today she got 20 viles of blood drawn and is currently doing her chemo. Tomorrow or Thursday she should be getting scans and then next Tuesday we head up to the City of Hope to meet with a social worker and she has to get another bone marrow biopsy. Hopefully after that they will be all set to accept her for the transplant, which now looks like it is pushed back until the 24th.

Currently Julie is having some anxiety from this all happening so fast and coming to a head. Presley too. Unfortunately reality can be scary at times. Not for me of course, I’m like super dude. But oddly enough, or maybe not, I think that once Julie actually gets to the City of Hope this will all calm down a little because there is nothing to anticipate. I guess we will see. In the meantime we will race around making sure everything is in order and hope for no hiccups or setbacks.

A message from the Queen

So I figure it’s been a while since I jumped on and gave everyone a big hello and thank you for all the support and prayers.  As all of you know I finished my last round of chemo at Scripps and should hopefully be headed to the City of Hope so that I can get my life back! I am both so happy to be blessed with a new beginning yet so scared at the same time. Unfortunately I will be away from my family for 3 months which is going to be so hard. Of that 90 days 3 weeks are in isolation. So for me that means that I can’t hug or touch my little monsters and husband for 3 weeks. I keep telling myself what’s 3 weeks for a life time but still pretty hard to fathom. When the City of Hope called to tell me that the transplant would most likely be done in the middle of June I was both scared and excited. Having to sit around and anticipate it is the worst! I would just rather go and not have to think about it. This is what we have been prepping my body for and now they have me where they want me.  If all my counts are good they should start all the testing for the transplant. It seems like ages ago that I was sitting In my doctors office getting the news that I had the horrible C word, but looking back that was just in February. It’s funny when you have cancer time feels like forever, I know I will look back at this and say remember when and hopefully my kids won’t remember the hospital stays constant doctors appointments and so on, what they will remember is that they got there mommy back that can run at the park with them and stay up with out being the first to go to sleep at night.
As much as cancer has obviously turned my life upside down for the last 3 years it has also opened my eyes to so much. For me it’s okay if my house is not perfect! I can play with my kids and clean later (my kids are going to remember me playing not cleaning). I’m really lucky that my husband and I have stayed supportive of each other and are not arguing (and I know I can be difficult) it has brought us closer as a family. It just puts everything into perspective in a big way.
I was talking to max the other night about my best friend Jeanette that passed away on my 21st birthday of cancer. Having had treatment I am amazed at how in high school she would keep up with us. Of course she Had her bad weeks and treatments, yet she was always ready to go. I know she had age on her side but I wonder how much of it was because she didn’t want to miss out. I never remember her complaining. This young lady was one strong cookie and I am blessed to have been friends with her. She showed me how to fight strong with an amazing attitude. I’m thankful for the angel I have looking down on me all the time and the example she gave me of how to fight the fight with a zest for loving life.
I am truly grateful for all of you that read our blog and send prayers are way, this journey would be a lot harder with out all of you. The support has filled my heart so much it is overflowing and I can’t wait for when I’m stronger to give that back to others. My friend Kristen sent me a picture of tank tops she had made to run the rock and roll marathon this weekend. They are lime green and have my website on it, I am honored that they would run wearing my name and I can’t wait till I can run again with you (and it will happen, a half is in my future for sure). I am truly blessed to have so many people on my side pulling for me and my family and I often think about the people that don’t have that support and I don’t know how they could get through it. I should probably try to go back to bed now, its 3:30 in the morning and I’m wide awake (oh well that’s what steroids will do to you). Once again THANK YOU so much for reading my blog and everything else that all of you have done for my family it has not gone unnoticed or unappreciated.


Much love Julie and family

A new friend

Same ole’ same ole’ today. Got some more fluid and Julie actually seemed a little bit better. Got a small bag of chemo as well so we can now knock that off the needed remaining chemo before the transplant. Now we head into the weekend and hope for some uneventful days ahead. And some rest. Lots of body ache and bone pain going on today.

On a lighter note from the standard cancer update Julie got to meet someone new today and do a little life coaching while in the midst of her own crisis. She got to sit in a room with a gal who has recently been diagnosed with leukemia and is not necessarily taking it all too well. She is around the same age so the doc thought it would be nice if Julie could share a few things. Anywho they seemed to get along well and this chic may be headed up to the City of Hope for treatments as well so they swapped some info in hopes of being chemo buds while up in Duarte. I thought that was pretty cool and especially cool if it works out that they can hang out while in treatment up away from home.

All in all a pretty solid day I would say. Hoping for a nice turnaround this weekend and be able to get the scheduled intrathecal done on Tuesday morning. Hope your weekends are swell too.

Deployment status

Well mom pulled a 5hr shift at the oncologist today being hydrated, testing her heart rate, and pulling blood. She unfortunately still seems to be very dehydrated so tomorrow she will return at 1pm for some more fluids. Luckily no fever seems to be showing so she has not won a trip to the hospital for some sleepover time.

More news happening today was in the form of a phone call from the City of Hope. Apparently they would like to get the transplant started on June 17th. So they sent over instructions on what needs to be done as far as testing and scans and if that is all completed Julie will be deployed on the 17th. As of today Dr. Frakes is not comfortable doing a bone marrow biopsy with Julies current state and counts, as well as she does not want to run scans without finishing the chemo she needs to do. This puts us at a bit of a stalemate but if Julie can come around through the weekend it all may play out according to plan.

Kind of scary coming so fast but also kind of cool since it takes away the anticipation and anxiety, as well as factors in the sooner you go the sooner you return.

For now we will see how well Julie is doing tomorrow and then maybe have a better idea as to what follows.