The worst is over, or at least so we think. Oceana's appetite has returned. She finally vomited the NG Tube after almost a week of feeling in constant misery: "Put it on hold" Oceana would scream, banging her head against the pillow; "Put it on hold until I fall asleep!" anxiously Oceana would exclaim, obsessing over the fact that she despised the tube to begin with. Thankfully, the tube did serve her well as it established balance within her stomach finally ending her daily emisis and fortunately kick starting her digestion so that she once again developed hunger. Once the tube came out, Oceana negotiated with the Drs. that she could and would eat in order not to have to have the tube again. She succeeded so far and thus the quality of hospital life has improved greatly for us all.
Ok, all seems well, except that Oceana is not making blood cells. At this point, she has had countless red blood transfusions, platelet transfusions, a short-lived allergic reaction that set her eating schedule behind a bit, triple doses of antibiotics around the clock and anti-nausea meds on demand. After the last phase, Oceana had started count recovery within 30 days and we were recovered and on home stay between phases within 42 days. Now, she hasn't even started the recovery process and is 52 days in! I have already asked the Docs over a week ago, is there a possibility that there won't be a count recovery? The answer was no, there is always count recovery. Wheww!
However, at the end of last week, I was told that if we didn't see any recovery over THIS weekend, the Drs. will want to perform a bone aspirate Monday (tomorrow 7/26) to determine if there is a "bone marrow infection." The biopsy is now evident since there has not been any count recovery over the weekend. I will now learn about something I didn't even know existed, the possibility of bone marrow infection. Not so alarming actually, considering the fact that I didn't understand anything about AML 7 months ago. What a way to continually gain an education.
The good news is that if all goes well we may actually be able to make our family reunion after all. This will help us tremendously, to be around family in a relaxed environment. I have mentioned to the Drs. that for Oceana's psychological state (and mine), we could really use this break. This can only happen if Oceana can have high enough blood count recovery before August 15th. We couldn't last a day out of the hospital under the current conditions. Heal, Oceana, heal!
As far as my psychological state to those concerned, I can only compare it to living in a different dimension. What was real is no longer real as our reality has been completely altered. What was important doesn't seem as important anymore with the exception of Oceana's success. Somehow, we have managed to continue DMA Transportation. Actually, the business is a key distraction for my psychological well being; a reminder that I have a purpose outside the hospital. Hospital life has taken it's toll and I have made mistakes, more mistakes then I have ever made in my career. Thank you for those of you who have overlooked my errors and continue your valued loyal support. DMA Transportation has a fantastic clientele built and developed sinced 2003. Thank you for making this company what it is today and continuing to support it during these chaotic times. A special thanks to Rob and Marcy Fenza, Tim Sheridan and family, Gloria Pasline, Gene and Roz Chaiken, Dan Chu, Nani Shin-Wannemacher, George Rafferty, Sister Tobie, Brian Biddulph Krentar, Steve Gansler and anyone else that I may have forgotten to mention, for keeping us in mind and keeping the company alive.
Sunday, July 25, 2010
Monday, July 12, 2010
Nausea, Nausea, Ad Nauseam
Well, not much else to report. Oceana, plagued with daily nausea, is unable to develop an appetite. Her nutrition is going to have to be supplemented. Sick every day since the last LP, (now two weeks ago) Oceana has not been able to eat. She will hang in there and will endure the trials of being neutropenic in order to conquer this cancer once and for all. If only this dimension would allow her the comfort of feeling well, this could be so much easier for her. Now, she must remember that she is experiencing the worst of the treatment and therefore once her counts recover, it will never be this challenging again. Yes, Oceana has one more phase to surpass, but in comparison, it should be much easier to handle. Although the treatment seems to never end, we anticipate the success she deserves.
No longer may we reason why, now we must accept and overcome. Time is on our side, as long as the clock ticks.
Not much else to write. We look forward to more uplifting updates, as we wait on the platform, ready to ride. There is no chicken exit, so focus your minds and remain strong!
No longer may we reason why, now we must accept and overcome. Time is on our side, as long as the clock ticks.
Not much else to write. We look forward to more uplifting updates, as we wait on the platform, ready to ride. There is no chicken exit, so focus your minds and remain strong!
Tuesday, July 6, 2010
Turning Point
Oceana has been subdued as of late, not saying much and sleeping a lot. The count recovery couldn't happen fast enough now, as her nutritional level is beginning to be in question from not eating. High fevers with regular nausea was expected after the 6th and final lumbar puncture with IT Chemo. This accompanied by continued low platelet and plasma counts caused uncomfortable, continual bleeding as well as several vomit sessions. Decisions are determined daily based on her early AM labs.
First, the doctors decided after her declining state to take her off the Amphotericin anti- fungal med as it is very harsh on the kidney function and was potentially beginning to create greater risks. This is a relief, actually, as she suffered greatly and needed one to two doses of demorral just to help her endure the "shakes". This med was administered every 24 hours. The doctors have chosen a lesser med that apparently doesn't cover all fungus, named Caspo. Thankfully, no side effects from this have occurred to date.
Second, Vitamin K a new necessity as Oceana's perpetual bleeding was not a result of low platelets. Apparently, the antibiotics she is on wiped out the vitamin K in her system and therefore without it, the blood does not coagulate properly. This caused Oceana to perpetually bleed slowly from her nose down the back of her throat to her stomach. She would spit out large clots and obsessively wipe her nose. Exhausted, she yelled at Dad "make it stop". There was no stopping this slow dripping discomfort. Ativan was the order to finally relax Oceana so that she could sleep. This did not stop the bleeding though and Oceana was ill again upon waking from all the blood in her stomach. Another non-good day to give her nutrition. Oceana took the vitamin K, the bleeding finally stopped the next day. Whew, what a mess!
Third, eat Oceana eat! The doctors presented us the options. Option 1, the NG Tube (been there, done that) which is a tube allowing formula to go through the nasal cavity directly into the stomach. Oceana hated the feeling of the formula dripping into her stomach when she had to have one previously. Option 2, TPN which is protein that goes directly into the blood stream via the Broviak. This has two major cons to it: The risk of a line infection is great because bacteria is often in protein as well as possible damage to the liver with protein that has a higher fat content. Finally, option 3 which is that Oceana is able to eat and manages to start manifesting the needed nutrition through eating food. This being said, Dad made lasagna right away and has been brain storming on how to get her to eat. Oceana has started to eat as well as keep the food long enough in her belly to digest. This is good. We only hope that we are in time to prevent either of the first two options from happening!
First, the doctors decided after her declining state to take her off the Amphotericin anti- fungal med as it is very harsh on the kidney function and was potentially beginning to create greater risks. This is a relief, actually, as she suffered greatly and needed one to two doses of demorral just to help her endure the "shakes". This med was administered every 24 hours. The doctors have chosen a lesser med that apparently doesn't cover all fungus, named Caspo. Thankfully, no side effects from this have occurred to date.
Second, Vitamin K a new necessity as Oceana's perpetual bleeding was not a result of low platelets. Apparently, the antibiotics she is on wiped out the vitamin K in her system and therefore without it, the blood does not coagulate properly. This caused Oceana to perpetually bleed slowly from her nose down the back of her throat to her stomach. She would spit out large clots and obsessively wipe her nose. Exhausted, she yelled at Dad "make it stop". There was no stopping this slow dripping discomfort. Ativan was the order to finally relax Oceana so that she could sleep. This did not stop the bleeding though and Oceana was ill again upon waking from all the blood in her stomach. Another non-good day to give her nutrition. Oceana took the vitamin K, the bleeding finally stopped the next day. Whew, what a mess!
Third, eat Oceana eat! The doctors presented us the options. Option 1, the NG Tube (been there, done that) which is a tube allowing formula to go through the nasal cavity directly into the stomach. Oceana hated the feeling of the formula dripping into her stomach when she had to have one previously. Option 2, TPN which is protein that goes directly into the blood stream via the Broviak. This has two major cons to it: The risk of a line infection is great because bacteria is often in protein as well as possible damage to the liver with protein that has a higher fat content. Finally, option 3 which is that Oceana is able to eat and manages to start manifesting the needed nutrition through eating food. This being said, Dad made lasagna right away and has been brain storming on how to get her to eat. Oceana has started to eat as well as keep the food long enough in her belly to digest. This is good. We only hope that we are in time to prevent either of the first two options from happening!
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