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!
Monday, June 28, 2010
Finally, 6 Down - Count Recovery Please
Oceana was awakened early today for the final lumbar puncture of Phase 4 enduring what seems to be "the never-ending intense chemo/hospital treatment." After having this procedure performed five times already, it still doesn't get any easier for her but at least we have finally figured out how to tweak the anesthesia, minimizing her emergence delirium. Fortunately, today the Oncology Day Hospital was ready for us upon our arrival from what seems to be our semi-permanent residence CHOP 3 South. This certainly minimized the anxiety producing waiting period we were subjected to during prior times.
After the procedure, Oceana always feels nausea and cries about the awful taste that the anesthesia leaves in her mouth. It is unfortunate that Oceana is able to taste everything that enters her Broviak (central line). Not all children have this ability, but our dear Oceana does. "Raspberry Tea Dad, I want raspberry tea!" Oceana demands. Of course Dad wants to get it but emphasizes that now is not the time to lose manners. After all, we have bent a lot of "structured" rules but proper manners must always be practiced. "Please Dad, get me raspberry tea!"
Oh well, the raspberry tea did not achieve the ultimate goal of "getting the awful taste out of her mouth." It did, however, manage to give her something to vomit instead of the previous dry heaves. Is this grossing you out? Sorry, but this is what it is.
Well, we now must wait for Oceana's blood counts to recover. The waiting game commences. Until then, anti-fungal medicine and antibiotics occur every day. The good news, all tests have come out clear! The treatment is undoubtedly harsh but thankfully Oceana is strong and can handle it. In fact, she is so strong that she still refuses to take Tylenol, exercising control stating that "It's a comfort med, not necessary for my recovery." She is absolutely right and endures the fevers, often alarming the nurses who desperately want her to take the Tylenol in order to lower her fever. Nope, not Oceana. She would rather fever than ingest any more Tylenol! This strength, beloved readers, is what will help make the difference for Oceana's success.
The sad news is that we will be right here for July 4th as well as the majority of August. Even though we will receive a ten day home stay between the end of this phase and the start of her last phase, it will be inopportune for proceeding with such summer plans as making the Green Day concert August 3rd or our family reunion in mid August. All is not lost, we will, as always, make the best of our situation. Perhaps we will manage to visit Hawaii at the close of summer, as we are reading a book about the Big Island (mahalo ohana). Whatever it will be, we will be celebrating completion of the final phase, provided all goes as it should.
Thank you Sister Tobie, Gloria Pasline, Aunt Barbara, Aunt Amie and Aunt Beverly for the kind care packages that you have sent to Oceana. Thank you Mom and Dad for your continued support and positive encouragement. Thank you Mamita and Norman for your special ways of helping us as well. Many thanks to ALL of the financial donors that have enabled us to manage our additional responsibilities while we endure this "other dimension of reality" that we never bargained for. Thank you for the cards, messages, emails and voice mails; for your thoughts and prayers. Thank you Nick for the music played and the music composed. Thank you Kelly W for your artistic mellow visit and Kelly B for your impressive & athletic dedication! Thank you Kim and family for your special ritual by the sea. Thank you Uncle Louis for your fabulous energy and care. Thank you Uncle Alex for majorly setting the supporting and foundational stage for our survival through this journey. Thank you Aunt Holly for your profound inspiration and care package as well! Thank you Uncle Chris and Ple for the healing charm and necklace. Thank you Jill for the beads necklace from the Angels vision. Thank you Susan's artist friend for the special stones and beads watch and bracelet. Thank you readers for keeping us virtual company and taking time to share the journey and sharing the news as they develop with your families.
After the procedure, Oceana always feels nausea and cries about the awful taste that the anesthesia leaves in her mouth. It is unfortunate that Oceana is able to taste everything that enters her Broviak (central line). Not all children have this ability, but our dear Oceana does. "Raspberry Tea Dad, I want raspberry tea!" Oceana demands. Of course Dad wants to get it but emphasizes that now is not the time to lose manners. After all, we have bent a lot of "structured" rules but proper manners must always be practiced. "Please Dad, get me raspberry tea!"
Oh well, the raspberry tea did not achieve the ultimate goal of "getting the awful taste out of her mouth." It did, however, manage to give her something to vomit instead of the previous dry heaves. Is this grossing you out? Sorry, but this is what it is.
Well, we now must wait for Oceana's blood counts to recover. The waiting game commences. Until then, anti-fungal medicine and antibiotics occur every day. The good news, all tests have come out clear! The treatment is undoubtedly harsh but thankfully Oceana is strong and can handle it. In fact, she is so strong that she still refuses to take Tylenol, exercising control stating that "It's a comfort med, not necessary for my recovery." She is absolutely right and endures the fevers, often alarming the nurses who desperately want her to take the Tylenol in order to lower her fever. Nope, not Oceana. She would rather fever than ingest any more Tylenol! This strength, beloved readers, is what will help make the difference for Oceana's success.
The sad news is that we will be right here for July 4th as well as the majority of August. Even though we will receive a ten day home stay between the end of this phase and the start of her last phase, it will be inopportune for proceeding with such summer plans as making the Green Day concert August 3rd or our family reunion in mid August. All is not lost, we will, as always, make the best of our situation. Perhaps we will manage to visit Hawaii at the close of summer, as we are reading a book about the Big Island (mahalo ohana). Whatever it will be, we will be celebrating completion of the final phase, provided all goes as it should.
Thank you Sister Tobie, Gloria Pasline, Aunt Barbara, Aunt Amie and Aunt Beverly for the kind care packages that you have sent to Oceana. Thank you Mom and Dad for your continued support and positive encouragement. Thank you Mamita and Norman for your special ways of helping us as well. Many thanks to ALL of the financial donors that have enabled us to manage our additional responsibilities while we endure this "other dimension of reality" that we never bargained for. Thank you for the cards, messages, emails and voice mails; for your thoughts and prayers. Thank you Nick for the music played and the music composed. Thank you Kelly W for your artistic mellow visit and Kelly B for your impressive & athletic dedication! Thank you Kim and family for your special ritual by the sea. Thank you Uncle Louis for your fabulous energy and care. Thank you Uncle Alex for majorly setting the supporting and foundational stage for our survival through this journey. Thank you Aunt Holly for your profound inspiration and care package as well! Thank you Uncle Chris and Ple for the healing charm and necklace. Thank you Jill for the beads necklace from the Angels vision. Thank you Susan's artist friend for the special stones and beads watch and bracelet. Thank you readers for keeping us virtual company and taking time to share the journey and sharing the news as they develop with your families.
Saturday, June 19, 2010
Taking Meds - Taking Time
We thought Oceana was better Wednesday as her fever leveled off and the gram-positive cocci had not reappeared in any other blood draws since the positive result Monday morning. Thankfully, the antibiotic did its job! Wednesday night brought more fever though, enough for the day clinic’s staff to decide to postpone the scheduled lumbar puncture for Thursday. Oceana was delighted at this news. She really dreads these procedures. Two spinal taps postponed in one week!
Unfortunately, Oceana is less than thrilled to take the necessary meds, as minimal as they are. She has decided that she doesn't need Tylenol anymore and since this is considered a comfort drug, the nursing staff has agreed not to force this one. Of course, when enduring a fever of 39.6 C°, the nurses aren't pleased with Oceana's choices. No, she must take Vitamin K, since this is considered to play a big part in helping to coagulate the blood. Oceana has had bloody noses this week that were in part a direct result of low platelets. Being hemophobic, Oceana does not do well with these. Actually, Dad doesn't either but he knows how important it is to just focus on "making it stop." Vitamin K is dissolved into water and given orally. Apparently, it doesn't taste good, as swallowing the orangy liquid triggers instant vomiting. Alas, child, you must take the medicine. It can’t keep taking an hour anymore. As we attempt to finish this blog entry the update is that finally she took her all her doses of “K”, whew!
The other unwanted med is Bactrim. It is necessary for preventing pneumonia. Originally, liquid Bactrim was the order. Eventually, the taste made her vomit. Then we tried broken tablets mixed in applesauce. That ended with the same result. Now we are trying crushed tablets into capsules but can't find capsules small enough as she is afraid to gag. Help? I will search surgical supply stores to look for smaller capsules. I hope that we can find a solution as it is very difficult to get Oceana to cooperate. She is tired of taking meds, "why can't it just go through the IV?" Oceana wishes she could do so by having Dad take the medicine and the "touching" dad in order to receive the med. It is just not possible, so sorry Oceana.
Make-A-Wish foundation CHOP volunteers stopped by yesterday to interview Oceana. Well, anyone that knows Oceana knows what she asked for! Of course, meeting the band Green Day! Her backup was a surprise though. If Green Day does not come through, she would like to meet Tim Burton.
Monday, June 14, 2010
The problem with being short staffed
Taking a moment to vent here, this is not from Oceana's perspective for the moment, it is 100% from me, Dad. This is, in my opinion, important enough to be addressed.
For whatever reason, the oncology floor at CHOP (3 South) has been short staffed recently. Typically, it appears that when this happens, they bring nurses from other floors. Since Oceana is an AML patient, we spend a lot of time inpatient and therefore we know most of the nurses. In fact, out of the last 4.5 months, we have only been home about 25 days. Anyway, this brings me to my point.
Oceana and I awoke Sunday morning to an unfamiliar person accessing her central line. We had never seen this nurse before and it was evident that she did not know what she was doing. Later that same night, Oceana started to have a high fever. The night shift nurse, different then the unfamiliar one, drew blood cultures. We learned later that morning that Oceana has a gram-positive cocci bacteria growth in her blood and has been extremely ill from it. Thankfully, the hospital staff immediately administered anti-biotic upon fevering for just this reason. Sadly, the hospital designated a nurse to a neutropenic child that was inexperienced with AML protocol and therefore caused the infection to begin with. So sad to watch Oceana suffer through this process, let alone by adding more problems. I only hope that this does not develop into something more serious and that the anti-biotic works. Would somebody please shout "Hello" to the staff, who in their right mind assigns an inexperienced nurse to a neutropenic AML patient! I am very upset by this. After all, is not CHOP supposed to be number one? Perhaps a lesson in humility would do this hospital well. Please understand that I am grateful that the hospital may cure my daughter, but extremely upset that they have made such a pathetic decision regarding her care. Apparently, according to the Dr and nurse practitioner, at least one infection is to be expected during an AML patients stay. Guess what, that's one too many!
For whatever reason, the oncology floor at CHOP (3 South) has been short staffed recently. Typically, it appears that when this happens, they bring nurses from other floors. Since Oceana is an AML patient, we spend a lot of time inpatient and therefore we know most of the nurses. In fact, out of the last 4.5 months, we have only been home about 25 days. Anyway, this brings me to my point.
Oceana and I awoke Sunday morning to an unfamiliar person accessing her central line. We had never seen this nurse before and it was evident that she did not know what she was doing. Later that same night, Oceana started to have a high fever. The night shift nurse, different then the unfamiliar one, drew blood cultures. We learned later that morning that Oceana has a gram-positive cocci bacteria growth in her blood and has been extremely ill from it. Thankfully, the hospital staff immediately administered anti-biotic upon fevering for just this reason. Sadly, the hospital designated a nurse to a neutropenic child that was inexperienced with AML protocol and therefore caused the infection to begin with. So sad to watch Oceana suffer through this process, let alone by adding more problems. I only hope that this does not develop into something more serious and that the anti-biotic works. Would somebody please shout "Hello" to the staff, who in their right mind assigns an inexperienced nurse to a neutropenic AML patient! I am very upset by this. After all, is not CHOP supposed to be number one? Perhaps a lesson in humility would do this hospital well. Please understand that I am grateful that the hospital may cure my daughter, but extremely upset that they have made such a pathetic decision regarding her care. Apparently, according to the Dr and nurse practitioner, at least one infection is to be expected during an AML patients stay. Guess what, that's one too many!
Sunday, June 13, 2010
May tomorrow never come!
Tomorrow includes another lumbar puncture with IT chemo. We have isolated that Oceana prefers not to do the gas anesthesia. Last Thursday, the anesthesiologist tried to use gas to see if this would work better for Oceana in preventing the emergence delirium. Although Oceana awoke immediately upon removal of the gas, she instantly became full of mucous, had a splitting headache and could not sit up or stand without feeling incredibly dizzy. In addition, Oceana was violently ill several times, vomiting bile and blood. This certainly was not pleasant! When given the gas, Oceana claims it felt horrible and that it seemed to take forever to fall asleep. Truthfully, it only took five seconds but there are times when five seconds can feel like an eternity! It was a bit difficult to determine whether the dizziness, headache and vomiting were a direct result of the anesthesia or as a result of the procedure (could have been what is called a spinal headache) but regardless, the gas experience was bad enough that she won't be trying that again!
Today, Oceana will be receiving both platelets and red blood via transfusions. She is currently nutrapenic and can now only accept the healthiest visitors as she is at high risk for infection. She is about to receive red blood and is not too happy. Even though she is quite used to getting transfusions, it still very unnerving for her as she prefers to have the red blood hidden from view. Queasy at the sight of blood, Oceana grabs her Daddy's head as she is tempted to bite his ear. "Daddy, get down here and stay down here!" Oceana yells. Well, not much else to say on this rainy day. Tomorrow will come quickly, lets hope that Oceana will be able to find some comfort before, during and after the procedure tomorrow.
Today, Oceana will be receiving both platelets and red blood via transfusions. She is currently nutrapenic and can now only accept the healthiest visitors as she is at high risk for infection. She is about to receive red blood and is not too happy. Even though she is quite used to getting transfusions, it still very unnerving for her as she prefers to have the red blood hidden from view. Queasy at the sight of blood, Oceana grabs her Daddy's head as she is tempted to bite his ear. "Daddy, get down here and stay down here!" Oceana yells. Well, not much else to say on this rainy day. Tomorrow will come quickly, lets hope that Oceana will be able to find some comfort before, during and after the procedure tomorrow.
Subscribe to:
Posts (Atom)