Like a Kick To The Mid Section

Like a kick to the mid section is really the only way I can explain how Kelly and I feel this morning.  Although only a few hours have gone by since our last post we learned some new information this morning.   We were awoken by the oncologist who is filling in for Dr. Scates while he is out on medical leave.  She was a soft spoken lady that told us the scans that they did yesterday actually showed that Kelly’s liver now has multiple lesions. This is not something we were expecting to hear right before we thought we were going to get discharged from the hospital. I told the Dr that this does not change our plans and that we want to get out of the hospital and be in our own home. She agreed and said that is fine. She also said that we would not be able to ever do the pill form for a blood thinner because Kelly’s liver is now compromised. This means I will have to give her injections basically forever. The oncologist still feels that the chemo we are doing is the only option we have for Kelly other than giving up because it has shown to have some success against Kelly’s particular type of cancer. Kelly actually took the news very well and stated to me that she does not want to give up and continue to receive the chemo. Her saying this made me have a breakdown because I know she fighting so hard still because of me and our families. I took the news much harder than she did, just trying to keep things together in front of Kelly and to try and be half as strong as she is. A normal person might just throw in the towel at this point, learning in the past three days that your cancer has spread to your other breast and now to your liver, but as well all know Kelly is not your average women. She is more special than any of us will ever understand. This blog is the hardest one I have had to type because things have changed so quickly for us and I want to spend every minute with Kelly. I really do not know what else to say but that I want to share this recent news with everyone else who cares so much about my wife. Please continue to pray for Kelly to be strong through this difficult time. God bless, Manny & Kelly

We Are Starting To Get Home Sick :(

Well today we received some unexpected news.  We thought we would be leaving the hospital today (Wednesday) but because Kelly has had such a high heart rate (125-150) the past week, the Dr’s felt something still might be going on. So this morning Kelly had to do a full chest scan to check for different things that could be happening.  We sat in our room patiently expecting the discharge nurse to come in any minute.  Well that never happened.  The hospital Dr came in to let us know that Kelly had a small blood clot in one of her lungs.  This was a big red flag to the Dr’s and they said we could not go home.  They said the team of Dr’s were going to collectively evaluate the situation and come up with the best solution for Kelly.  Around 5pm the Dr finally came back to tell us that they wanted to keep Kelly on blood thinner shots but just up the dose and do this from home. The one thing that would prevent us from doing this plan was if the insurance would cover the shots and let us administer them at home. Well we checked with the insurance and they said they will share the cost of the shots with us. That beats us staying the hospital another five days which is what was option B.  While taking these shots, we have to get her blood checked every other day to make sure the blood is actually thinning.  The Doctors believe that with Kelly’s condition and the fact that she has been battling a lot of anxiety, she is high risk for blood clotting. The fact that she has cancer could also be making her heart just work harder. The Doctors all felt strongly about getting Kelly home and that her anxiety should get a bit better when we get back to familiar surroundings. Because I have the experience giving Kelly injections from when did our fertility treatments back last July, the Dr’s feel comfortable for us to administer at home.

On a couple good notes, Kelly has not had a fever since Saturday, so any infection that she had should be gone.  Because Kelly was doing well and had no infections, they decided to give her all of her Chemos yesterday.  They feel like we have to be as aggressive as possible because the cancer is so aggressive.  So far Kelly has handled this week’s chemo well, she is just very fatigued and wants to sleep most of the day.The oncologist visited us this morning and said that the samples they have taken from Kelly’s brain fluid have come back with no cancer cells in them.  Sounds like great news to me but the Dr said this probably just means the samples they have been taking were not large enough samples to find cancer in them.  The entire team of Dr’s that have tried to pull fluid out of Kelly's brain have had problems.   Even the surgeon who put in the port could not get a good draw.  Hopefully the oncologist is wrong and the cancer in the spine is really gone because the chemo is kicking its butt! We will have to wait about a week to see the next sample results. 

So we should be going home sometime tomorrow if everything goes well tonight and in the morning.  Kelly has expressed many times how bad she just wants to get up out of the bed and go home. Lately, Kelly has been experiencing nightmares in which she is walking in her dreams but only to wake up and be able to move.  This has brought her a lot anxiety, especially at night.  This will be another obstacle we will have to overcome but I know we can get through it. Thank you for all the wonderful comments, wish we had time to write back to everyone just not enough time in the day. God bless you all.
Manny & Kelly

Blood Cell Counts Back Up

Well after four days in the hospital we literally do not know much more information.  They have not been able to find anything out from all the tests they performed.  What we do know is there is No infection found in the brain or anywhere else for that matter.  That was the big concern, a infection to the brain and spinal fluid.  They think because the anti biotic’s started attacking any bacteria that was growing before the cultures where taken at Hazel Hawkins.  It could also be that her immune system was so low that she just got sick from all the chemo.  The good news is that her temperature is back down to normal and she is starting to be more aware of what's going on.  She is not nearly as confused as she was the past couple days.  Kelly’s white blood cell count was way down yesterday, so low to the point where we could not have any visitors and she could only have certain cooked foods.  She received a bone marrow shot yesterday which brought up her cell count today.  It is a good thing for her counts to bounce back up that quickly.  If things keep going well, we may be back home by Wednesday.  Kelly is scheduled to get a intratheical (aka chemo delivered directly to the brain) dose of chemo tomorrow morning.  They will also take some fluid out at that time to send to the lab to check and see if the number of tumor cells in her spine has gone down.  If it has gone down, she will only have to receive the intratheical chemo once a week as opposed to twice a week.   She is also set to get another treatment of Gemzar on Wednesday.   On a bad note, Kelly does seem to have another lump starting in her left breast now.  It started a couple weeks ago when we first noticed it.  We showed the Dr this morning and she did not have much to say other then it feels and looks like cancer.   This lump really does not change the course of action and treatment because Kelly already has metastatic cancer in multiple areas of the body.  The hope is that the chemo Kelly just started will help with all the cancer in her body including the skin, lymph nodes and breast along with the brain and spine.   She has a lot going on but this girl does not give up! She is a fighter and we all have a lot to learn from her about never giving up and or complaining about a bad situation.  Let’s all pray that she has a super good response from the Carboplatin and Gemzar treatments (Aka Chemo that goes throughout the entire body)

Kelly still is in a lot of pain, mostly in her spine..this has been the one thing that makes being at home miserable for Kelly and a challenge for me.  I did have a conversation with a pain management Dr. today about what we could do to keep Kelly more comfortable.  I think we have a game plan that could work but we will see.  We also have a new 24 hour / live in caregiver that was with us last week…Kelly and I really like her…This should make being at home a little easier for the both of us. 

  I will try to keep you all posted as things happen.  Thank you for continuing to read the blog and for all the good vibes and prayers!  God bless you all.  
~ Manny & Kelly

Back In The Hospital

This is Manny typing this post...

Because so much has happened since our last post and due to time I am going to keep this as simple and brief as possible. Well it has been a hectic past three weeks since we got home from our last visit to the hospital. Three weeks ago. Kelly and I have had to change our entire way of life because of her immobility. Our living room looks similar to a hospital room these days. Our days are either spent in the house or up at the oncology office in San Jose. First few trips getting South Bay oncology were nightmares because of transportation issues...but Jan Holthouse came to our rescue. She has been so nice and gracious to let us borrow her family's handicap equipped van when we have appointments etc. We also found a very nice live in caregiver (Edna) who has been great the past week for us. But this post is more about where we are now... which is at O'connor Hospital. Things started this past Tuesday. Kelly received chemo on Tuesday afternoon, two new ones (carboplatin & gemzar) along with her normal intratheical chemo. It was a long rough day to say the least. We got home late in the afternoon and Kelly almost immediately started to run a fever. Long story short, over the course of the next two days Kelly got progressively worse. Fever went up to 102.7, had major chills, really bad pain through her whole body and started to get really confused. The Dr's told us over the phone that if this condition persisted that we should get to the ER. I finally got Kelly over to Hazel Hawkins on Thursday night. She got admitted a few hours after they evaluated her in the ER. The docs at hazel felt that because Kelly was a cancer patient and high risk, they did not really feel all that comfortable treating her. They got her on antibiotics, fluids, etc but started contacting our Doctors to see if she should be transferred. They decided yesterday afternoon that it would be a good idea for her to be transferred to O’connor since they are more familiar with Kelly's history. I must say, we were quite happy with our experience at Hazel. The nurses and the resident Doctor (Dr. Minoee) were fabulous. Also must thank Anthony Mojica for being so helpful in getting us admitted quickly and for taking such good care of us during our stay. We got transferred by ambulance last night (Friday) and got into our old room at O'connor at about 8:00pm. The staff immediately got Kelly hooked up to more antibiotics and pain medicine. Because Kelly has some open wounds on her chest from the cancer, it could be a source of infection or it could be that she has an infection in her brain or spinal fluid from the chemo. Could also just be the cancer getting more aggressive. Everything is really up in the air right now. We are awaiting results from lots of blood tests, and spinal fluid cultures that we drawn this morning from her brain port. As of right now, Kelly is doing a little better. Yesterday was a very scary day for everyone…I never felt that scared because Kelly was not responding much to me. Kelly was basically not cognitive for most of the day. She was very confused and tired. Her fever got up to 102.9. Today it’s been back down to 99.5-99.9. The Doctors think we will be here for a minimum of 2-3 days until they can figure out what’s really going on.On a side note, our wonder drug that we have been waiting for (The PARP Inhibitor) that would have been given with our current chemo regimen is not going to happen. We found out on Monday that the drug was finally available but the company that produces it will not let Kelly participate because she is not mobile. Somewhere in the tiny print, it mentions the patient must at least be able to stand and walk a little to qualify for the drug. This is due to the company that makes the drug trying to get FDA approval. It's very political and we are not happy about any of this, but there is not much we can do at this point. Basically it’s Bull S*@% and other expletives that I won’t mention here. Our oncologists say their hands are tied. All I can say is unbelievable!Our main focus right now is to get Kelly better, then get her standing again, then walking so that we can get that drug in the future.

Thank you all for continuing to pray and support us during this time. I know a lot of you want to see Kelly but she is just not up for visitors still in her condition please understand. You can always try to text me if you want to know info, just cannot guarantee I can respond to everyone.

Also want to say a big THANK YOU to all of you have participated on the dinner delivery for...that makes a huge difference for me and one less thing I have to worry about. The food has been great and Kelly and I really appreciate the kind gestures. Thank you to Shawna for setting everything up and for Tiffany helping with deliveries everything else you do.

God bless, Manny & Kelly

Still In The Hospital…

Still in the Hospital as of today, Sunday May 30th.  Yesterday was a tiring day for Kelly.  It started Friday afternoon after we met with a new Doctor,(Dr. Andrews).  He is a Neurologist, Neurosurgeon and he is also specialized in radio surgery, gamma knife, etc which may be treatment options for Kelly’s brain at some point in the future.  His recommendation to us was to get a Ommaya Reservoir (Chemo Port in the brain) installed as soon as possible. This port is where the new treatment will be given from. The port is where the chemo will be injected to the brain and spinal fluids.   I agreed that this should be done quickly so she could recover and get started on the chemo ASAP.  Dr. Andrews mentioned that in order for him to do the procedure, we would have to get a MRI of the entire brain ASAP to see if their was any new obstructions or issues that would stop us from doing the surgery.  Dr Andrews then ordered a MRI of her head that was suppose to take place at 8pm…unfortunately Kelly did not get taken down until after 11pm because of issues the MRI machine was having.  Due to the late MRI, Kelly was not up back in the room till after midnight.  Then she needed to have a special head wash that would be used as a disinfectant for her head to help prevent infection during the procedure.  Most of the night nurses were in and out checking vitals etc so morning came quickly with little sleep for both Kelly and I. The hospital staff came to the room a little before 7:30am to take her down to the OR.  When we got to the OR we met with the anesthesiologist (Dr. Sullivan) and Dr. Andrews to go over the surgery.  After chatting with Dr. Sullivan, we found out he is actually best friends with our other surgeon who preformed Kelly’s mastectomy (Dr. Walsh).  This was weird because they even look a lot a like lol.  I guess Dr Walsh was even in Dr Sullivan's wedding.   Anyway, Kelly then got her IV courage as they like to call it and was off. 

She was in surgery for about an hour.  Dr Andrews came out the waiting room, got me and whisked me into the recovery room.  Normally guests are not allowed in but being that is was a Saturday and no other patients where there they said it was fine.  Dr Andrews and I had a conversation at that point…he informed me that the procedure went well and that it would take about 10 days before the stitches could come, etc.  He then told me some good news…he believes from what he could see on the MRI that Kelly’s two tumors had decreased in size a good amount, almost to where they were hard to see on the MRI (Yay).  He was not able to provide us any new news about the Meningi involvement though, which is what is the bigger issue for Kelly.  Dr. Andrews let me know that they did pull out some spinal/brain fluid during the procedure which will be sent out for testing which may determine how effective the radiation was against the tumor cells in the brain and in the Meningi. 

One of Dr Scates (our oncologist) partners from South Bay Oncology visited with us this morning in regards to what we need to do next for Kelly.  The Oncologist had talked with Dr Scates and agreed that we should wait till Monday to receive her first dose of spinal fluid chemo which would give her a full day to heal from the surgery.  As of right now, we are thinking that we may be going home sometime on Monday afternoon, but this is not a for sure thing…It will mostly depend on how Kelly does after her first chemo treatment.   We are anxious to get home but at the same time because of Kelly’s limited mobility we understand the hospital is probably the best place to be right now.    The nurses are asking that she does not have any visitors at this time due to the fact that she has had almost no rest in the last few days and she gets tired quickly from the pain meds.

The other news we heard is that by Kelly taking the spinal treatments, she will not be excluded from the trial drug she was set to begin called PARP Inhibitor.  This type of treatment is given with two chemo therapies, the major one being Carboplatin.  The initial results from the first trial of this drug was very successful and promising, so we are hoping they drug company will release this drug ASAP and Kelly can begin on that as well. 

Thank you all for checking the blog for the latest on Kelly as I know so many of you are worried about how she is doing.  I will continue to try and keep this blog as current as I can.  Hopefully, Kelly can start writing again soon, when she starts to feel a bit better.  She misses talking and seeing everyone…she loves all of you and appreciates all the support and kind words you continue to bring her.

God bless, Manny

Blog from Manny

Hi Everyone -  This is actually Manny writing this post because Kelly is very tired and under lots of anxiety, stress and the like at this time.  I wanted to give everyone the latest update on our situation as it’s impossible to answer every call and text.  I think Verizon is going to be very happy with us this month, hopefully Kelly has us set up with unlimited minutes and texts lol.  Well...I will try to make this short and sweet as I am not nearly as good of a blogger as my lovely wife.  

It started on Monday afternoon when our primary physician recommended that we go to the ER ASAP because Kelly was experiencing a high heart rate (125-130) and she was loosing almost all function of her lower half, walking was becoming impossible.  So we drove up to O'Connor hospital at 10:00pm on Monday night.  Much to our surprise the ER was crazy packed...more then 50 people ahead of us.  Kelly got frightened at this point and began to get very upset (caused by steroids mostly).  Well my mom (Adela) was somehow able to talk the nurses desk into getting to Kelly right away.  By 11:00pm we were in a ER Room.  Unfortunately, that was just the beginning as they had to ran a multitude of tests on poor little Kelly.  They finally decided to admit her at 6:30am..what a long night. 

Since Monday we have been in the Hospital running more tests.  The Dr's could not find anything wrong so they figured to truly know what was happening they would need to perform a lumbar puncture(spinal tap) to get fluid from the spine to check for cancer.  That was done on Wednesday and as of right now (Friday afternoon) we don't have the final official pathology report.  However early reports are showing about 50% of the cells in the spinal fluid are showing suspicious stuff...which they believe is the breast cancer cells attacking the good cells.  Our Dr (Skates) has told us we basically only have one option for treatment, which is a special type of chemo therapy that is injected directly into the spinal fluid.  This can be done two ways..first is by way of a spinal tap in which Kelly would have to come to the hospital each and every time...not a good way to go being that is so painful.  The second option is we have  port put in just under the scalp of her head. This procedure will need to be done by a neurosurgeon here at O'Connor.  This option will make things much easier in the long run for Kelly's future treatments so I think this is what we are leaning towards.  The neurologist on staff here is suppose to meet with us sometime this afternoon to talk about the procedure.  This new information does leave us in a sort of dilemma because Kelly was scheduled to start a trial version of a drug called PARP inhibitor next week, but our Doc believes by doing the spinal treatments she may not be eligible for the trial.   Hopefully this is not the case but it might very well be.  I wish I had better news but it just seems like we keep getting hit with stuff we don't want to hear.  Hopefully, god willing, Kelly will get the procedure done soon and get the treatment she needs and be able to get home.  The tricky part will be getting the house set up well enough so that she can get around easily being that she cannot walk.  We have a home care case manager looking into getting us special home supplies to make the transition easier. 

Well everyone, now is the time we need all your positive energy and prayers the most.  We cannot give up this fight because I know Kelly is not giving up!  She is the strongest women I think most all of us have ever met and she is a inspiration to everyone.  She is my wife, my hero ,my everything and I will do all I can in my power to get her back to health.  Thank you for all the support you have given her over the past year...this blog has been one of the big reasons she has done so well through all of this so I thank you for reading and staying current on our situation. 

We love you all!  God Bless.  Manny Freitas

Also here are some awesome things Mark Silva has done for Kelly. His new tattoo with her name also a new addition to his paddle board. Awesome!

Also here is a picture of Kelly in the hospital.

Tough Times…day by day

Note: please excuse the typos & grammar issues. 

I am about to have a physical therapy session with Manny and thought I would write a quick hello to you all.

My body is slowly getting worse and we are looking into at home care to help with all the stuff I need because it’s been Manny doing all this stuff for me and that is hard for him. I am constantly working through this in my mind and body but the steroids are very difficult and also make you very depressed even crazy so it’s a tough battle. I will get through.

So if you are not hearing from me or I am not totally “there” please understand it’s the steroids. 

Thank you for your continued support we truly appreciate it and need it.

Smile.

Kelly & Manny Freitas