I can't believe that's its been almost 2 months since I posted last. A lot has happened and I'm not sure where to start - I feel like I say this every time LOL
So Russ started the case study drug TKI258 at end of February and by the first week of March, he was in the emergency room with a splitting headache. He woke up vomiting around 5 AM and was complaining of an extreme headache - the first thing I thought of was if it was a stroke or if he had passed out and hit his head or something. He always has headaches but it's usually because of his high blood pressure, so he takes his meds and he's normally okay, but this time it was different - MUCH DIFFERENT. He said it was radiating from the back of his head to the front but only on 1 side. I immediately call his mom to see what I should do (she's an RN) and Russ is just holding his head rocking back and forth moaning and crying (he NEVER cries) - she said to immediately take him in and that she was sending Mike over to watch the kids while I took Russ in. So by this point, it's 6 AM and I'm running around the house like a mad woman trying to gather all of him meds, Huntsman conacts, study med info, etc. Then trying to find clothes for both of us and wake up Haley to let her know what's going on. We were out the door by 6:08 AM (why I remember the time I don't know) and to IMC by about 6:15 AM. They take his blood pressure and it's at 138/100 - NOT okay. They immediately take him back to a room and order a head CT scan (remember he just had one the week before and it was clean) and then we didn't see the doc again for about 45 min due to another emergency and Russ started stablizing. My friend Amy showed up and sat with me and that helped calm my nerves a ton!! Then a nurse came and gave him some Zofran and it knocked him out cold. So it all turned out to be okay, but still sooooo scary!! So I took him home and we chilled out the rest of the day. The next day he had an appt with his pain clinic doc and when they took his blood pressure, it was still at 138/99, which is still too high - I just don't get it!! I immediately call the nurse over his case study and she wants to see him the next day to adjust his meds. We go the next day and all we get is a run around and they tell him to stop taking his case study meds until his blood pressure gets under control. Oh and he ended up in acute care TWICE during this period and they still refused to admit him because his blood pressure was normal when he would go in - it was at night that it would spike - every darn time - but they refused to believe me. They advised us to buy a blood pressure cuff, so we did and I started a log of his blood pressure and started emailing it to the nurse. I think that's when they started to pay attention because that's when they finally adjusted his meds, which seemed to help - we thought........
Man I really struggled at this point - I felt like I was melting down psychologically - none of the docs knew what to do and there was literally nothing I could do. Thank goodness for good friends who took me out to get away from it all and check on me every day.
So after he was 'stable' for a week, we decided to have him start back up on the case study meds but this time at a lower dose AND it was in capsule form instead of tablet and we were told that it seemed to be 'more tolerable' and 'lower side effects', so we thought okay let's give this ONE MORE TRY.......oh boy we couldn't have been more wrong.....
He started about mid March and was good the first 2 days, then on the 3rd day.....BAM......at about 8 PM, Russ started vomiting and had major shortness of breath. This time I took his blood pressure and it was sky high - mainly because of his pain levels - he was complaining that his abdomen had sharp pains and that he just wanted to go lay down. So when he was done vomiting, I took him to the bedroom and then everything went downhill. He was sitting on the bed and leaning his head on my stomach. He said that he thought he was going to pass out - I yelled at Haley to grab me a damp cold towel just in case so I could snap him out of it and also yelling at her to grab all of his pills and his colostomy pack for the emergency room. He then started saying that his legs were going numb.....then the first thought I had was that if he collapsed I couldn't lift him by myself, so I called my neighbor Bryan over and had him help me hold Russ up while I called 911. Russ was hyperventilating and sweating profusely and the rest of his body proceeded to go numb and his fingers went stiff and that scared the crap out of both of us.....I thought for sure he was either having a heart attack or stroke........I thought it was the end. In the meantime I had also talked to his dad Mike and told him to come over to take care of the girls and I could just hear Audra and Taylor crying in the background during this.....I was shaking and trying to talk to the 911 operator and keep it together....oh and keep Russ coherent and comfortable. Just then the paramedics showed up and started to ask about his medical history and writing down all of his meds (all of which I have dates and meds memorized) and taking his vitals. Bryan then took the girls across the street to his house thank goodness....Mike stayed with me and Russ while the paramedics were finishing their evaluation. They packed up Russ and got him out to the ambulance while I was trying to get his bag ready and for some reason I couldn't find my freaking shoes!!! I was so mad about it....I ended up wearing some weird shoes, not sure why I remember this either LOL.....so then I get outside to the ambulance and they were just loading him up....it was dark and there are these bright lights on the ambulance that illuminate a halo around it, so everything else looks like shadows....I remember seeing a lot of shadows - later I found out that it was all of my neighbors coming out to see if everything was okay.....I have such great neighbors!!! I rode in the front of the ambulance and they were trying to hook Russ up to an IV, which it took 4 pokes since he was so dehydrated. I remember the driver was so nice and was so calm - why was he so freaking calm when I was such a mess?!?! We get to the ER and he's still in a ton of pain and we get to a room and they give him some pain meds and anxiety/anti-nausea meds and he started calming down. It turns out that they think he had an abdominal blockage and that it had passed on it's own. They also think it's from a previous abdominal surgery where the scar tissue had wrapped itself around the intestine - they did an abdominal CT scan and everything looked normal. At this point, we knew that it was the end of the road with any experimental drugs or anything else for this matter. He has been through hell and back and is still so strong. At this point, the bishop came and gave Russ a blessing and then my friend Jackie came and sat with me for a couple of hours. We were released at about 4 AM and Mike came and picked us up and took us home. Mike and Irene kept the girls until about 1 PM and brought them home. We all just hung out and spent the rest of the day as a family - so many people came by and visited and let us know how much they loved us - it really meant a lot...we are so lucky!! On March 27th, Russ went into Dr. Sharma's office and signed the official paperwork to end the case study and to go do an ECG (echocardiogram) - which they didn't tell us that he needed to do - shocking. On March 30th, Russ was scheduled to have two small tumors on his chest removed in clinic, so we show up and the surgeon looks at him and she says that they don't want to touch one of tumors due to it being so close to his port and they didn't want to get the port infected because it's directly connected into his heart. The other tumor about 8 inches below his port was under his muscle and she absolutely didn't want to do it with a local anesthetic and that she would need to put him under....but that she couldn't do it until the next week!! I swear.....if one more doctor doesn't communicate with the other I'm going to lose it!! So here we are...another week lost. So we show up on April 5th and getting him prepped, and the anesthesiologist walks in and she proceeds to tell us that she didn't want to put him under because his ECG showed that his heart 'isn't pumping like a 36 year old heart should' - we were in SHOCK - 1 month previous when he had an ECG, it was completely NORMAL......with all of the trauma he had had in only 1 month, his heart was actually weakened!! The anesthesiologist said that she'll numb the area but that she would need to keep him awake but that the meds she would give him wouldn't make him care.......so what the heck let's do it.....what else do you do??? The surgeon was super quick and got him in and out of there in about 45 minutes. Russ was super anxious to get home so he sped through post surgery and we were on our way home!! Then Russ pulls another shocker and says....let's go out to lunch....I looked at him like he had lost his mind and said NO you need to go home to rest. He insisted that he wanted to go to The Cheesecake Factory, so I gave in and we went to lunch. Inbetween thae time driving and getting to the restaurant I started freaking out a little bit from processing the events of everything that had just happened from that morning......I broke down and started bawling in the booth - Russ just looked at me helpless and held my hand. After my 5 min of insanity, we ordered and ate and talked and had some incredible cheesecake. I almost had him talked into walking the new 'Crate and Barrel' next door but knew better and took him home. He crashed and I took some quiet time to catch up on some work. My parents had kept the kids the night before and were on their way to drop them off at home. They even took them Easter dress shopping!! I will have to post pics soon - once I figure out how to get them off my new camera! The next weekend was Easter and we went to go listen to Russ's parents talk in church and then went to our ward and Taylor sang with her Activities Days group. We then ditched the girls at church and went home - Russ was pretty spent at this point. I went and picked up the girls when church was done and then had some nice quality time at home and then went to Russ's parents house for Easter dinner. The kids had an Easter egg hunt after and it was so much fun - the weather was Gorgeous!! What a nice day :)
Then on Tuesday - Taylor and Audra both had fevers - so I took them into Instacare (I do this every time now due to Russ's immune system and if he catches anything simple then it could kill him) - they checked for strep, flu and pneumonia - the strep was negative and the flu test can take 24-48 hours (which also turned up negative) and gave Audra a chest xray just to make sure there was no pneumonia. I stayed home Tuesday and Wednesday and by Wednesday night I was starting to feel icky. I just wrote it off as allergies and went to bed. I woke up and felt horrible, but because I had missed 2 days of work, I needed to go in to get some paperwork done. Everyone was telling me to go home, so I stayed for about 6 hours and went home. Friday was bad, and Saturday morning was worse. Finally last night, I started to feel some relief and this morning my ears popped and I can breathe out of 1 side of my nose....finally some progress!! Audra is also better. Poor Taylor is still suffering and she has a weird white bump on the white of her eye - she says it doesn't hurt, so I'm just keeping it lubricated and keeping a cold damp cloth on it - its seeming to get better. I'm just hoping her fevers go away today so she can go to school tomorrow. Russ is doing well and even went to work 3 days this week!! Now only if his short term disability paperwork can be figured out so he can get his 2 missing paychecks.............................
On a positive note, we are going to Disneyland soon!! We are going for 6 days and everything is planned out and organized, we are so excited!! I don't think we've ever taken a family trip just the 5 of us and I'm sure it will be memorable....I just hope it's not the only one.....and if it is, then it will rock.
I want to make sure that I express how much we love and appreciate everyone. We sincerely think that the only reason Russ is still with us is because of all the prayers said on his behalf. He has already beaten the odds by several months and not sure how much time is left. I dont know how we could have made it through the past couple of months without our friends and family.....I hope I can make it up to all of you some day.
Love to you all -