“You never really know what's coming. A small wave, or maybe a big one. All you can really do is hope that when it comes, you can surf over it, instead of drown in its monstrosity.”
― Alysha Speer
So here we are, a year removed from our last post, and we find that there has been much activity in regards to Tiffany's health that we must begin anew and update all who wish to know what is going on. Up until recently, we have been sufficiently happy with telling all who ask that all is well, that we are enjoying the miracle we have been given. And a greater truth would be hard to find.
The miracle was this... That every day we got to be with Tiffany, was a day worth celebrating, and the fact that we were not held to hospital visits, home bound holidays, or scheduling outings between doctors appointments was a marvelous miracle we have thoroughly enjoyed.
But, as it often does after a good period, dark clouds move in and obliterate the rays of sunshine streaming onto our little family. Lightening hasn't struck, nor has the rain fallen, but as the breeze picks up the threat is upon us and we are moving to shelter as we prepare for a storm. The size of which, has yet to be determined, nor the damage it will cause. But shelter is being found due to the auspice site of the approaching storm. Faith is being strengthened, prayers are being said, and we are doing everything short of demanding another miracle, as that is not ours to demand. Hope, yes. Demand, no.
About a year ago Tiffany started complaining of a pain in her back. She had been exercising and we wondered, somewhat, at the time if this was something she did as she was running or doing aerobics. The pain initially was subtle and infrequent, but as time passed on, it seemed to grow both in intensity and frequency. Tiffany ran a half marathon with her sister at the end of August, and though she was in good shape and felt great through most of it, her back seemed to be especially painful after the run.
During this whole time, she has continued to visit her doctor on a regular basis to get check ups and run blood tests. Around January 2012 there was a concern with her platelet count dropping a bit and he asked for her to come back every couple of months. Towards the end of the year, there seemed to be no hint of anything going wrong until the November checkup. During that checkup, there was an indication of continued platelet drops which concerned the oncologist and made mention that he would likely be asking for a CT scan after the next checkup in January or February. Not really so much out of concern as it seemed that time had sufficiently passed that he wanted to check a new CT scan and compare it to the one she had a year ago.
Meanwhile, her back continued to ache and give her problems. She had asked the oncologist about it once or twice, but he mostly blew it off as a little concern, something more for her family doctor to look into. At the beginning of December, Tiffany's back started giving her problems to such an extent that sitting was uncomfortable and sleeping on our otherwise comfy bed would prove to exacerbate the problem and I would find her sleeping flat on the floor on numerous occasions. The discomfort of the floor was less than the discomfort of her back in the soft bed. Finally, after much consternation and stubbornness, Tiffany decided to talk to a doctor about it. We were hoping that we would find a slipped disc, out of place due to her exercising or something, and that we would just move forward and work on that little issue along with everything else she has been dealing with. However, in the back of our minds (mostly hers - I was honestly simply hoping for the slipped disc issue), was a slight concern of a mass that was found in her back two years ago when she received the PET scan prior to her splenectomy two years ago. The results from that suggested there was a small mass in her spine, which our doctors at the time blew off as the issues at play at the time were much more pressing and urgent and this appeared small and inconsequential.
To make a long story short, she went to the family doctor in December after she had tried to talk to the oncologist, and understanding her history, he ended up ordering an MRI. The MRI showed the mass on her spine as indicated by previous tests and the family doctor took this sufficiently serious and referred us to a neurosurgeon in Ogden. As this was Christmas time, this neurosurgeon or his staff didn't get back to us for a week or two and once he did, he suggested that the placement of this mass was of such concern to him, that he didn't want to touch it and suggested we talk to the chief neurosurgeon at the University Hospital in Salt Lake City who dealt with more cases similar to ours. However, the fact that Tiffany was not a patient of this initial neurosurgeon proved problematic as they had no info to give her off to the University Hospital which delayed a response from them, obviously to our frustration.
Through this, Tiffany ended up having an appointment with her oncologist to get a routine check up and blood test. The blood test showed a spike in her white blood count to levels much higher than normal which caused the oncologist to order the CT scan - targeting her liver. That was completed the last part of January and we went back to the oncologist to find the results. The CT scan had nothing new to report from previous reports. But as the oncologist talked to us he suggested that he didn't believe the pathologist reports. In the report, it suggested her liver had small pockets of fatty tissue on her liver, and suggested this was normal. The oncologist suggested that he would expect to see fatty tissue on somebody who was diabetic or on the obese side of heavy - of which Tiffany is neither. To find out what those pockets of fatty tissue are, a biopsy would have to be done, the CT scan just shows that something is there. He then showed us a couple of graphs of the blood tests she has been given over the last couple of years. He said his concern wasn't so much the spike in white blood count as it was the continued increase in white blood count since her surgery two years ago. It has been a relatively steady rise while her platelet count, which initially jumped to normal levels after the spleen had been removed, had continued to decrease to concerning levels. The white blood count jump and the mass found through the MRI had just been the final straw that put the doctor in a position to finally do something about what he had been seeing all along. He was sufficiently concerned and suggested we needed to talk to doctors up at Huntsman Cancer Institute with consultation with him for what the next steps should be. We have been waiting and watching for a couple of years and things continue to appear to not be getting better, and since this is not a normal case, he wants to get a gaggle of doctors together to come up with the next steps. Normally, he suggested, with the blood counts he sees, he would likely be treating Tiffany with chemotherapy and would have likely already done so. The fact that other symptoms that should be showing up consistent with the original diagnosis are not showing up (such as waking up drenched in sweat, fevers, headaches, etc) he has not wanted to treat her as she is living an otherwise normal life. But his concern for her well being is evident as the blood tests suggest that something needs to be done.
So he got us in contact with the chief neurosurgeon at the University Hospital and with Martha Glenn at the Huntsman Cancer Institute. We had two appointments that happened earlier this week. Tuesday we met with Doctor Sarah McEvoy, from the neurosurgeons office, and met with Doctor Glenn on Thursday.
Doctor McEvoy looked at the scans and is 95% confident that the mass in Tiffany's back is a Peripheral Schwannomas Nerve Sheath Tumor. And from what we understand, this is good news as this is benign and though surgery will likely have to take place some time, for the time being we can treat the pain without worry of it doing additional damage. Dr. McEvoy suggested that this tumor has been in Tiffany's spine for many years, maybe even a couple of decades. It has either gotten to the point where there is a bit of pain now, or the area has been inflamed due to outside influences (sickness, exercise, lack of exercise - a myriad of reasons). Either way, we have opted to currently deal with the pain, wait another three months, have another MRI done and compare that to the one she just had to see if it is growing and if so, at what rate. Once we have that information, we can then make decisions as to what to do next.
However, after meeting with Dr. Glenn on Thursday, there may need to be additional considerations depending on what happens in her office.
In meeting with Dr. Glenn looking into Tiffany's blood count and other cancer considerations, she suggested that the blood counts aren't helping our cause, but that she wants to have another bone marrow biopsy, a liver biopsy, and a PET scan (Tiffany has recently had sharp pains under her rib cage and Dr. Glenn wants to rule out some things - hence the PET scan). The assumption that Dr. Glenn has, is that we will likely see similar diagnosis as we had two years ago and with the current state of blood counts, it is likely time to start doing something about it, meaning chemotherapy treatments and a bone marrow transplant. We were hoping that in the two years since the original diagnosis we would see some different treatment for this, but though we didn't hear that, Dr. Glenn did suggest that there is more information now that the treatment is working.
Of course, more information as to what the next steps will be are forthcoming once the test results are in. To that end, we are seeking the strength of prayers from those that are reading this. Faith precedes the miracle. And faith is shown in many ways, but prayers are one way people can help when nothing else can really be done. Again, we do not wish to demand a miracle, though we would be pleased if the tests came back clean.
(Though, in some small way, this would exacerbate our frustration - why would the blood counts be helter-skelter if there wasn't something causing it to be that way? We would likely just have to endure more tests until an answer was found. Sometimes, answers, even ones we don't want to hear, are better than no answers. Sometimes.)
As dark clouds gather, and the portent of a storm is around us, I wish to share something that Tiffany said about a week before this all started crashing around us...
She had been preparing for a lesson in which the Jaredites were crossing the ocean in their boats put together with the help of the Lord. The story is told that the 'ships were tight like unto a dish' and they were tossed to and fro by the waves of the sea towards their destination - caused by the Lord himself. And they were 'buried' many times in the depths of the sea 'because of the mountain waves which broke upon them, and also the great and terrible tempests which were caused by the fierceness of the wind'. But - after 344 days - they arrived to the promised land.
Tiffany asked me,
"Are you ready to get on the boat with me? I think there are turbulent waters ahead, and though it won't be fun, perhaps we can look forward to putting our troubles behind us with a great future."
She said it to me as a serious question, somewhat knowing, foreshadowing, of events waiting around the corner for us.
I'm not sure what my reply was right then, though it was definitely in the affirmative. But I suggest that at the end of the our story, just like these Jaredites, we will be more than just joyous that we made it to land, we will be joyous for the 'multitude' of tender mercies given to us throughout the process - no matter what the promised land looks like.
We are appreciative of all your care and concern, and most importantly, your prayers as we look forward to the day the dark clouds disperse, and the rays of light surround us again.
“Our most significant opportunities will be found in times of greatest difficulty.”
― Thomas S. Monson
5 And it came to pass that the Lord God caused that there should be a furious wind blow upon the face of the waters, towards the promised land; and thus they were tossed upon the waves of the sea before the wind.6 And it came to pass that they were many times buried in the depths of the sea, because of the mountain waves which broke upon them, and also the great and terrible tempests which were caused by the fierceness of the wind.7 And it came to pass that when they were buried in the deep there was no water that could hurt them, their vessels being tight like unto a dish, and also they were tight like unto the ark of Noah; therefore when they were encompassed about by many waters they did cry unto the Lord, and he did bring them forth again upon the top of the waters.8 And it came to pass that the wind did never cease to blow towards the promised land while they were upon the waters; and thus they were driven forth before the wind.9 And they did sing praises unto the Lord; yea, the brother of Jared did sing praises unto the Lord, and he did thank and praise the Lord all the day long; and when the night came, they did not cease to praise the Lord.10 And thus they were driven forth; and no monster of the sea could break them, neither whale that could mar them; and they did have light continually, whether it was above the water or under the water.12 And they did land upon the shore of the promised land. And when they had set their feet upon the shores of the promised land they bowed themselves down upon the face of the land, and did humble themselves before the Lord, and did shed tears of joy before the Lord, because of the multitude of his tender mercies over them.