Life is like a Roller Coaster; You can either scream every time you hit a bump, or you can throw your hands up in the air and enjoy it! ~Anonymous
Life is like a Roller Coaster. If you don't get on, you can't experience the adventure. ~Mariah Carey
Life is like a Roller Coaster. Sometimes you close your eyes in sheer terror. Other times, you just have to raise your hands up in the air and enjoy the ride! ~ Unknown
Life, like a Roller Coaster, is never a dull ride. ~ Anonymous
Life is like a Roller Coaster; It goes up and down, makes you scream, and costs a lot to ride. ~ Hanna Cheatem - age 6
.... The Story Continues...
When we last left off, our superhero Tiffany had just powered through a day of lowest of lows to get back on an emotional high when all of a sudden, Thursday came...
Thursday - 8/14/14 - Tiffany's parents came down to take Tiffany to a day of fun at Huntsman. What kind of fun, you ask? Well - she went down to do the following:
Get a platelet transfusion that would bring her platelet count up to 50 so they could...
Do a Lumbar Puncture to check for possible cancer cells in the spinal fluid...
and then minor surgery where they were to take out her single port and replace it with a triple line, preparatory to start the transplant process.
After getting in and doing her first platelets - there was concern that it might take two or more units of platelets to get to her to the required count of 50 - the minimum to be able to do minor surgery. After one unit, they tested her counts again and they came back - an astounding 70! They haven't been that high for many months. As the infusion floor erupted in applause, they got her ready to go to get her lumbar puncture (LP). As she was at the hospital, and me working, I continued to get updates throughout the day - both from her parents, the nurses, and also Tiffany herself. All were excited until I received a call a little while into the LP. It was Debbie, Dr. Glenn's nurse.
In the excitement of the platelets, the other blood counts were missed, and she had a concerning number in her hemoglobin - about 5.7. The night before she was at 8.8 and on Monday she was 9.1. he had been dropping slowly for a few weeks now and we expected it to get around 7.5, the level they require a blood transfusion, sometime in the next week or so. But it shouldn't have been a concern. Debbie suggested that while the platelets seemed to come in quite higher than they expected with one unit of platelets, that the hemoglobin was suspiciously low. How did she lose 3 points - about 2 units of blood - in about an 18 hour window? There was no sign of bleeding anywhere, so Debbie was trying to get access to Tiffany to get another sample. They eventually got it (there is a long story in that as well - they ended up having to do two additional lab tests - the first one was sent to the wrong lab and would take something like 3-4 hours to get the results back to the nurses - so they ended up doing a third one so they could get results back quicker).
When that lab came back, it showed that her platelets were down to 51, a bit more of where we expected them to be after one unit of platelets, but her hemoglobin was still down to 5.7. She has been low before, but there have only been a couple times she has ever gotten below a 6. And really - she never should be - that is quite low counts. Why the drop, we don't know. We may never know. There was nothing we can find that would explain it. But the emotions and feelings of the last couple of days seemed to be evidence of low hemoglobin - so I will wonder if maybe the tests we did on Tuesday were wrong - but we may never know.
With the blood counts so low - they needed to get additional blood transfusions in her, but it was already 6:00 PM. The infusion center had already closed, and the doctor ordered three units to be transfused into Tiff, which is about an 8 hour process. So what do you do? You get admitted to the hospital! So upstairs she went and waited for a room. Neither she nor her mother were prepared to stay the night - but stay the night they did. Her dad ended up going home for the evening.
Friday 8/15/14 - Friday came and Tiff was still getting the remaining part of her transfusions. Oh, and here is the twist... at the end of her 8 hours of blood transfusions, they added on another unit of platelets. Why, you ask?
Oh, that was because back the prior Friday, Tiff was asked by the transplant team to get final pass off from her OB/GYN and Dentist. The OB was easy, they had seen her relatively recently and passed her off without much problem. The dentist, who we saw on Wednesday (big roller coaster hill day - see part 1) had ended up talking with the doctors and they decided that with the issues at hand - they would do a root canal on the wisdom tooth. So, thanks to a good Endodontist who got her in relatively quickly, we retrieved Tiffany from the hospital and with an hour to spare, got her to the Endodontist to do the root canal - and that was what the extra platelets were for - so that there wouldn't be a large risk of bleeding during the procedure.
So, the end of the week came and the transplant was only a few days away. We had had a crazy and somewhat rough week. Each time we head up to Huntsman it ends up taking most of the day. It isn't unusual to leave our home around 9-10am and get home around 5-6 in the evening. We joke that we should just get jobs up there since we are there so much.
Saturday was mostly a restful day - trying to tie up a few items prior to transplant the next Wednesday, and prepping for Monday and Tuesday - more long days at the hospital in prep of the transplant.
Sunday, after church, we took the family up to Tiffany's parents home and invited her siblings to join us in a family prayer and desert - Tiffany wanted to share with them the love she had for them and wanted them to know it prior to going in for this treatment.
Monday 8/18/14 - Another busy day, a little bit tepid, but hopeful, that the tests today would help our cause to get to transplant. Two weeks earlier Tiffany had a lung test, and it came back showing concerns, enough to allow the transplant to move forward, but if it had dropped any, the docs would have to change the severity of the treatment as her lungs wouldn't be able to handle the full dose they want to give her for the best fighting chance for this to work. So up to Huntsman we went to get that done, get a CT scan of her chest, and then off to talk to Dr. Hildebrandt - the Transplant director. He was going to be the one that gave the thumbs up or down to whether or not we would go forward with things.
Labs and tests done, we ended up talking with Dr. Hildebrandt - a big burly German - with German accent. After a review of the CT scan and pulmonary test - which both seemed to show a positive improvement over the last ones a couple weeks before - he gave us the thumbs up! Of course, that came with a caveat. Tiffany has been experiencing some issues relating to her hearing and feeling like she is under water. They weren't overly concerned, but they set up a hearing test and discussion with and ENT doctor for Tuesday, and set up an MRI on her brain later that night. As long as it all came back negative - they would move forward on Wednesday with the transplant.
So we packed up and headed to the radiology department to get the MRI done. Because we weren't emergency and we didn't have an appointment we had to wait till a machine opened up. Let's just say we waited for a while. In the meanwhile, as I went to get some Dinner for Tiffany - we got a call from the doctors office...
After we had left, the doctors started looking a little closer to Tiffs labs and saw that from Friday to Monday - her white count had dropped substantially. Fearing that starting a transplant amidst a drop like that could be dangerous - they opted to postpone the transplant. If she were to have an infection, or some other issue they weren't aware of, they could possibly do some damage. So they called us up to let us know that they had just postponed the transplant to August 28th, pending the donor could do it then.
Auugghhh - after all that - everything was set. I had schedules set up for help with the kids, to ensure Tiff had somebody with her all the time, work was set up with time off requested, etc, etc, etc. And then to get that pulled. Like the Wednesday before, it kind of sucks the wind out of your sails for a few minutes. But eventually - you get back on board. You want to say - 'hey, we need to get on this transplant - we don't have time to postpone', all the while you know that the doctors know the clinical side of this better than I do (though - c'mon - Tiffany and I have really gotten quite a crash course on all things cancer related). They asked her to come back in the morning to do a bone marrow biopsy - yes, her favorite test in the world - as they wanted to confirm a few items before they moved forward with everything.
Tuesday - 8/19/14 - We left early to get up to Huntsman to do the bone marrow biopsy - which went alright. Tiffany actually noted that maybe next time she won't get some of the drugs that takes the edge off, suggesting that she is getting so used to the pain - that she can handle it. I am hoping she doesn't have to go through one again. After slightly recovering from that (which really takes a week or two to really recover) we headed to the audiology department and she took an audio test. Ha... they put her in a sound room and half way through the test, thanks to the drugs they gave her for the bone marrow biopsy - she started falling asleep! So there is a part of the test that looks like she failed miserably. But the doctors saw what happened. With the results from the audio test and the MRI from the night before, we ended up talking to the ENT doctor, and found everything to be fine. She suggested that the issues why Tiffany was feeling 'under water' was likely due to the large weight loss she has been experiencing the last few weeks. On Monday - she was down to 102 pounds. A bit frail physically, but mentally and spiritually - as strong as ever (today, at least). The quick weight loss created some spacing between some openings between the throat and ears which created the issue. It wasn't a common thing (but again, since when was Tiffany anything but common?) but hopefully when she can put some weight back on, and if that doesn't do it - she can either live with it - or possibly get some drugs to help it out. We opted to wait for the weight to come back and hopefully help out - we figured she was already taking enough drugs - no need to add more.
After this - it was back to get more platelets. Her platelets had dropped since the prior week - and needed more. Again, another long day at Huntsman - too many lately.
Wednesday - 8/20/14 - a rest day. The first day we haven't had to worry about too many things - oh - except a new drug the doctors wanted us to take. We are also thankful for Walmart. The pharmacist that called me up to tell me about the drug said that most places don't carry it because of how expensive it is and because of how seldom it is used, so we would likely have to run up to Huntsman. Explaining we live 50 minutes away - one way - I asked if there was anywhere closer. She suggested she would call and see if there was and would get back to me. Ha - wouldn't you know it - our local Walmart had the drug! Little blessed miracle. It was so nice to jump in the car, pick up the prescription, and be home in a total of about 15 minutes. Thanks, Walmart, for carrying expensive and seldom used drugs!
Thursday - 8/21/14 - Almost a full day of rest without the worry of doctors or nurses... almost. We got called halfway through the day by the nurses and let us know that the doctor had ordered a special shot Tiffany needed to take each day. It is a shot that she has had after chemo rounds to help give a spike to her white count and help keep the infection fighting cells active. They ended up sending a weeks worth of doses to our home and just tonight, a home health nurse came in to show us how to administer it.
OK - so here we are - mostly caught up. I know there are things I missed - but that is our crazy - roller coaster of a couple of weeks.
We continue to hope and pray - as I know many, many of you are doing as well, that we make it to transplant and have this shot. So until next time... happy thrill seeking... and trust me - you don't want to ride the roller coaster we are on... go find a better one somewhere else!