Re-diagnosis. And ready, set, go!!!

Here is a blog post from Valerie. You can read her personal blog by clicking here.

Today I started my new chemo regimen after learning that I was misdiagnosed 3 years ago. It was a very successful day. I always manage to talk some dear friend of mine to give up many hours of their day to come sit at a Dr office with me, and today was no different. I'm glad I don't have to ever be alone.

What a blessing!

I'm not the kind of person that typically needs a lot of alone time. Some is nice, yes, but I feel happier and stronger when I am surrounded by people that I can interact with. A "social butterfly" type of a person? Yeah maybe. I just love interacting with others and, although, if given a choice, I'd pick a much more fun way to do it, this is my opportunity right now. Writing and knowing that even a few people read it makes me feel so good. It makes me feel stronger, because I know that people are rooting for me.

After a 6 hour appointment and an hour drive home, the effects of the treatment were starting to hit me. I could feel my legs shaking as I stood and I was getting these crazy hot flashes, mostly on my bald head, and I was feeling the start of my old friend...nausea.

Being home is much, much, much better than being hospitalized (uh, duh). It can be hard though, when all I do is say hi to my babies (ok, I know they aren't technically babies, but you mommy's get it, right?) and after a quick hug, Jess help get me upstairs into bed and I fall asleep for practically the rest of the night. I wake up, can't get out of bed yet, but I see them a few more times, then we say our family prayers and it is bedtime.

At least I get to hear them in the house. Playing, fighting, making messes, you know...just being kids! A mother's symphony.

This treatment is going to be hard and rigorous on my body. Five days a week of chemo, two weeks off, then repeat. Bleh.

All I can really think of right now is getting through this well...now that my diagnosis makes a bit more sense. I just feel so grateful that Dr Reeder was so persistent. Instead of looking at what I have been through and playing the game of "which things did I unnecessarily suffer through", I prefer to think about how much more I would've gone through with out these new findings. Years more of treatments that would be ineffective. I really dodged a bullet.

We always pray that my Dr can think with a clear mind and that he will be lead in the direction that our Heavenly father wants for us. Well, I personally fell like this is a answer to that prayer.

Gratitude, relief, and my good ol' stubborn determination are all I feel right now. I've been through too much to even think about giving up now!!!

Focusing on the Positive

Well that was quite the bombshell. Yesterday we had an appointment with Dr. Reeder to discuss Valerie's treatment and we expected that he was going to have Valerie do a 3rd cycle of ICE chemotherapy before her stem cell transplant. Nothing could have prepared us for the news that he shared with us. 

"Valerie, you don't have Hodgkin's Lymphoma". I think that's what he said. It was kind of a blur and after Valerie and I picked up our jaws up off the floor things began to make sense. He said that Val has a rare form of NHL (Non-Hodgkin's Lymphoma) called Large B Cell Lymphoma and that it can look like Hodgkin's in biopsy. More testing and scrutiny should have been done to determine the right type of lymphoma. Somebody at the lab in 2010 definitely dropped the ball.

He mentioned that there were two red flags that made him doubt Valerie's initial diagnosis in 2010. He said that there was a marker in the biopsy that was not consistent with HL (Hodgkin's Lymphoma) and the 2nd was the brain tumor. It is extremely rare for HL to show up in the brain. Back in February when I asked him how rare, he said that Valerie was probably one of three people in the country; so he was unsettled since we first came to him.

This whole time Valerie has been getting the wrong kind of chemo...for years. When one is diagnosed with lymphoma there is something called "1st line treatment". Its the kind of chemo you get first and if you relapse, they give you "2nd line treatment" or "salvage" treatment. First line treatment for HL is ABVD (adriamycin, bleomycin, vinblastine, dacarbazine) which Valerie received for a long time and grew resistant to so she got the 2nd line treatment for HL, ICE (ifosfamide, cardoplatin, etoposide).

She never got the first line treatment for her particular form of NHL called R-CHOP. I'll spare you the stupid names, you get the idea or click the link if you want to know what it is. There is a good chance that this could have put her into remission, but we don't want to dwell on that too much. 

Dr. Reeder is going to put her right into 2nd line treatment R-ESHAP. She starts tomorrow with the R part which is Rutaximab, or Rituxan and then the full treatment of R-ESHAP starting on Monday. This chemo is given over 5 days so she will be going to Mayo for five days straight and then get 2 full weeks to recover and then do it all over again. Then God willing, start the stem cell transplant process.

We are grateful that Dr. Reeder was diligent in his care for Valerie. We are grateful to finally be on the right path. This did set us back about 2 months so please continue to share the site with your friends and family. Thank you all so much for your contribution even if you were only able to give $5. Every little bit counts. 

Important Update from Valerie

Here is an update that Valerie just posted on Facebook. It's very significant news. 

Ok. I'm still processing this, so forgive me for just putting the facts out there. I'll blog about my feelings later. I was misdiagnosed 3 years ago and have been getting treatments for the wrong type of cancer. My new Dr didn't like the way some things didn't really make sense (tumors in spine and brain) for Hodgkin's Lymphoma. He re-tested my original biopsy from 2010 and it is a less common form of Non Hodgkins Lymphoma called "Large Cell Lymphoma". It needs a totally different type of chemo treatment and I will start this Thursday then do the stem cell transplant. Although this is hard to process at the moment I feel like it is an answer to our prayers because we are praying for me to be healed and for the Dr's to be lead to the right path for that to happen. I am grateful to have this new knowledge as we can now work towards putting a "THE END" at the end of this story.

Good news and bad news.

We had an appointment today with Valerie's transplant coordinator to go over her crazy schedule for the next few weeks. She did an excellent job explaining everything that she was going to do and what to expect. As she was going through Valerie's record and test results, she noticed that the PET scan results were posted so she made a quick call to Dr. Reeder so that he can review them. 

She continued to explain so much including the process for stem cell collection, medications, what to expect during her stay in the hospital, and the types of chemotherapy that she would receive. There was so much more and Valerie felt as though many of her questions were answered. 

She told Valerie that the day that she receives her stem cells is going to be her new birthday and that the transplant was going to re-boot her entire system and especially her immune system. That was really exciting!

The good news. The chemo that she has been receiving is working to shrink to single solitary mass of cancer that is in her body. It was exactly as we expected and we thank God for this amazing blessing.

The bad news. It was not enough of a response the satisfy Dr. Reeder and move forward with the stem cell collection and following transplant. So, it looks like Valerie is going to have to do another cycle of the ICE chemotherapy and its going to set her back 3 weeks. Bummer.

We were so excited to move to the next step in the treatment but it looks like we have to wait. Thank you all so much for the prayers and support and please continue to share this site over email, social media, and your friends and neighbors. It is greatly appreciated.

Valerie got home...and went right back.

Valerie got home late Thursday night after spending about 4 day in the hospital for an infection/fever/procedures/etc. She is so happy to be home and is grateful she gets to sleep in her own bed and be close to the kids. She did have to go right back early the next morning for a PET and CT scan to see how responsive her body has been to the chemo. Fingers crossed everyone!

After getting the antibiotics that she needed to kill the bacterial infection it seemed as though she was having trouble producing platelets. Her white blood count was creeping up slowly but her platelets were continually low. 

This needed to be addressed because she still needed to get her IT chemo. The way that this chemo is administered is from a lumbar puncture and when your platelets are low, your blood won't clot and seal the lumbar puncture. I believe they gave her 6 bags of donated platelets total and on Thursday afternoon, her count was high enough for the procedure the take place.  

The biggest side-effect of the IT chemo is headaches. The best way Valerie has been able to manage the pain is to lay down and be still. If you know Valerie, she HATES this. She would much rather be doing something fun or productive than laying down watching TV of surfing the web. It literally drives her crazy. 

Tomorrow (Monday) morning is going to be busy. First appointment is at 9AM and the last is at 5PM. We'll know more tomorrow but these appointments are in relation to her stem cell transplant and collection. Hope all goes according to plan. 

One day at a time.

Bacterial Infection

Very quick update regarding the last 2 days. 

Valerie was starting to feel a bit better but they identified a specific bacteria that was swimming around in her blood so she was not going to be able to come home until they got a handle on it. So this morning they gave her the news about the infection and when I first heard the name of the bacteria, I kind of freaked. But, the doctors did not seem to concerned   and reassured Val that there is a specific antibiotic regimen that would kill the bacteria right away. Yay!

Valerie was also scheduled to get another lumbar puncture for chemo. Her blood count was still very low but they were going to green light the procedure anyway. First they needed to give her 2 bags of donated platelets. Well, that still was not enough so they postponed her procedure until tomorrow. Cross your fingers and hope this gets done. The reason they need her platelets to be sufficient is because they are needed to clot in case of a wound (lumbar puncture).

That's it in a nutshell. Thanks for all the prayers and support.

What a crazy day today.

Valerie had a very busy day today. Where do I start? 

I woke up abut 4 AM this morning to go to work and I heard Valerie up and she was not doing so well. She was shaking and having rigors. We took her temperature and it was at 100.4 degrees. We agreed that the sensible thing to do would be to take her to the ER so we took the kids to school and off to North Phoenix we go. 

The first thing they did was take her blood and as we expected she was very neutropenic and since she has had her blood booster, Neupogen, already, they decided to to a blood transfusion. So they started with platelets which looked like yellow goo. After the platelets they gave her a bag of freshly donated blood (Thank you random blood donor.) and IV antibiotics. And then they took her to her suite.

I guess Mayo is kind of a big deal because even though its not a  really a suite, it's the best hospital room I have seen.

Next came the lumbar puncture to draw spinal fluid to check for meningitis. Scary, I know but since they haven't pulled out the big guns, we are safe to assume that it came back negative. So good news. The bad news, kinda, is that they could not give her IT chemo today and this sets her back at least a day in the treatment plan.

As of now they have had some trouble getting her temperature down and that needs to happen in order for her to get the 2nd blood transfusion...which we are really praying for. As I'm typing this, I am home with our kids and Val is trying to get some sleep in between the time that they are poking and prodding her for one reason or another.

I am so grateful that she is getting top notch care. Mayo Clinic is absolutely a step above in the care that they are providing Valerie. Tomorrow is a new day, can't wait to see the progress Valerie makes. 

Please excuse the quick and shoddy update. My beautiful editor is busy trying to get well. Thank you so much for the support. Good night!

ER visit today.

After a looong day at Mayo yesterday, Valerie had a challenging night last night and this morning. She was dealing with the lumbar puncture soreness, the IT chemo headache, and, to top it off, she has also been fighting a stubborn sinus infection for the last few days! She needs a break! Needless to say she handled all of this like a champ and I am so proud of her.

This morning Valerie showed me her finger. I saw that it was red and swollen. A few days ago she discovered a tiny wound on her finger and had no idea how it happened. Even a tiny infection can be potentially dangerous because there is only a few white blood cells floating around in her body trying to fight all infections. They can't do it all alone!

I made a call to the on-call doctor and give him a quick rundown. I told him about this last week, then when I get to the part about the infected finger, he stops me mid sentence and tells me to get in the car (with Val) and take her to the ER.

All of the boys were away from home doing Boy Scout activities and weren't due to be done for a few hours. I made a few calls and was able to get Valerie a ride up to the North Phoenix Mayo ER. We have such great friends. My plan was for the kids and I to go up later right after dinner. I was sure she'd have to be admitted for IV antibiotics.

Our six year old, Lily was really sad that Val had to leave, but that opened the opportunity for me to hug and comfort her while she cried a little.  I just love to hold her in my arms.

About 4 hours later I was so glad to be caught off guard when Val called me and the first words to come out of her mouth were, "come and get me!" Hallelujah! They gave her the option to come home with an antibiotics prescription and she jumped all over that one! That was a no-brainer!

I'm so happy to report this good news! She will be gone for a month soon and we certainly don't want to add to time that we spend apart.

Valerie got home about 7 PM and is currently resting and watching the kids be loud, crazy and playing X-Box Kinect. Life is good right now. We are soaking it up like crazy! 

We get a day off from medical stuff tomorrow and we'll get to go to church, Val will probably stay home and I'll arrange for her to receive the Sacrament at home. Then on to Monday when she gets another blood draw, Iumbar puncture, and IT (intrathecal) chemo. One day at a time. 

Lumbar Puncture. (Sounds fun right?)

Yesterday Valerie recieved a call from Patti, Dr. Reeder's nurse, that she needed to have a lumbar puncture today. It was very short notice but we were expecting something because they added another regimen to her treatment recently. Because of Valerie's brain tumor, Dr. Reeder added more chemo to her treatment that was going to go directly in her spinal fluid. I know, it sounds crazy but that is what she is doing today. 

The day at Mayo Phoenix started today at 11 AM with Valerie getting her blood drawn for testing. Her white blood count came back so low that Patti called her to tell her that she may need a blood transfusion. Val was secretly hoping that Patti was calling to tell her that her blood came back so low that chemo would be delayed. Not to be, and this is not what we wanted to hear as we felt like our day here was long enough but that is just us being selfish. We are grateful that she is getting such top notch care.  

So now, as I type this Valerie is by herself, which sucks because I hate leaving her in these situations, literally getting stabbed in the back. 

I'll post an update tonight and some photos will follow as well. Thanks for all the donations! We are having an amazing campaign and you guys are making it so that I can focus on my family during this crazy time.