Adjust, adjust, adjust! You know your busy when the clock falls back and you are excited because you can get a 25 hour day in order to "catch up to life!" Yes, it has been like that. Oceana is adjusting to non hospital life one day at a time. Obsessive over SIMS, she was playing non stop (as much as she was allowed) until Dad accidentally left it in Kyla's room at the beach house during Halloween Weekend. Ocean City featured a business trick or treat event on Saturday that was reinforced by a residential event on Sunday. Oceana was a rock star (appropriately so) blowing off the wig that didn't fit her well and exposing her dark shiny regrowth pronounced by a widow's peak. Eddie Munster or a rock star....lol. It didn't matter, a good time was had by all!
Oceana is now enrolled in cyber school. We are currently waiting for the materials so that she may actually begin. The Cyber School takes a few weeks in order for the materials to arrive; this is a good thing to know before hand as a family may consider to start the enrollment process sooner, rather then waiting for such things as a broviak (central line) to be removed. Certainly, we did not anticipate this delay. Oceana's cyber school should begin by Nov.14th.
Hip hop dance, gymnastics and karate are all of Oceana's choices for physical exercise and peer social interaction. As long as she has the interest and discipline to do so, we plan to encourage her participation. She's not there yet, as Oceana is easily winded when playing with the neighbor (Emily Dinella) as well as with both Kyla and Tai. Oceana is slowly building back her endurance even though she is becoming quite strong and solid. She has gained over 15 pounds since we left CHOP August 16th.
Today we return to Outpatient CHOP. A CT scan has been ordered so that we may hopefully not see FUNGI NODULES. Vfend is the antibiotic of CHOP choice, produced by Pfizer costing over $3000.00 a bottle for 120 (200mg) pills. Do these qualify as "super pills?" I suppose we will find out today if she has indeed overcome the Fungi. In addition, Osh will have her blood drawn today. This is not fun, AT ALL. Since Oceana's Broviak has been removed, she must now get stuck in order to give a blood sample. This, my friends and family, is a "NIGHTMARE" for Osh. Admittedly, the second time Oceana went through the "sticking" process, she did much better. We hope that today it will not hurt and that she will tame her vivid imagination and phobia regarding blood.
As we have had to take measures one day at a time in order to cope and adjust to our newly found hospital diagnosis, We now are taking measures in order to readjust our lives so that we can continue to strengthen Oceana. We are especially grateful for all the love and positive energy that we have received from all of you. Knowing that there is so much love in our family helps encourage Oceana to want to achieve her definitive goals.
Monday, November 8, 2010
Thursday, September 30, 2010
"Good Intentions"
Wow, can you believe it is October tomorrow? What has happened to 2010? Better yet, how about this decade? After all, I remember vividly toasting the new millennium in Bonny Doon, California. Oceana was the planned event, and sure enough she arrived later that December. I'll never forget that day. Perhaps this was the only planned event that came to fruition from the millennium toast. Certainly, I didn't see us living on the East Coast. Moreover, I never imagined all of the series of unfortunate events that have occurred during this decade. Somehow, there is always a silver lining in the horizon that illuminates the present future no matter how "dark" the current reality is. It is not always easy to find and requires a certain level of optimism to achieve.
This optimism is what has kept me going, not only through the last nine months but through out my life, thankfully. What I have come to realize is that not everyone has the ability to see my silver lining and is therefore not always on the same page. Often, I get carried away in optimism (the very thing that keeps me going) and thus the ideal that I wish to create falls apart. Different realities, perceptions, and misunderstandings interfere with my optimistic ideals. Ultimately, I want what any father wants for his family, security, health and love. If I have offended anyone over the last nine months with my ideals or by overstepping boundaries, please know that this was not my intent and that I am not at all trying to take advantage of anyone's support. My nuclear family and I are very grateful for the aid our family and friends have elected to provide. Tomorrow, I have a financial appointment with CHOP, in which we will begin to pay what has not been covered by our insurance. Our family and friends have donated over $7,000.00, of which will be given directly towards our exorbitant CHOP hospital bills, physician bills and added co-pays. Patricia, Oceana and I thank you for the support.
Most importantly, Oceana is doing quite well. Healthy, (knock on wood) she remains. Oceana's body is finally manufacturing blood products on her own and therefore her central line is scheduled to be removed. Our visits to CHOP will hopefully start to dwindle as we still visit the outpatient clinic a minimum of once a week. We are doing everything we possibly can to try and make sure a relapse does not occur by changing our living space, eating healthier and by having a better awareness of the toxins in our environment. We are also considering alternative preventive methods; we are open minded to keep Oceana healthy. Suggestions are welcomed if anyone wishes to offer any knowledge on preventive practices.
I want to take a moment to thank my wife. Prior to Oceana's admittance into CHOP, Trish had quit working for my company in June of 2009, as many of you already knew. After noticing that our world revolved around CHOP and that my presence was needed there 24/7, Trish immediately stepped in and helped out with my business while maintaining her full time job. In a time of crisis, Trish stepped up and hit a home run as a team and family player knowing exactly what needed to be done. Muchas gracias mi amor.
This optimism is what has kept me going, not only through the last nine months but through out my life, thankfully. What I have come to realize is that not everyone has the ability to see my silver lining and is therefore not always on the same page. Often, I get carried away in optimism (the very thing that keeps me going) and thus the ideal that I wish to create falls apart. Different realities, perceptions, and misunderstandings interfere with my optimistic ideals. Ultimately, I want what any father wants for his family, security, health and love. If I have offended anyone over the last nine months with my ideals or by overstepping boundaries, please know that this was not my intent and that I am not at all trying to take advantage of anyone's support. My nuclear family and I are very grateful for the aid our family and friends have elected to provide. Tomorrow, I have a financial appointment with CHOP, in which we will begin to pay what has not been covered by our insurance. Our family and friends have donated over $7,000.00, of which will be given directly towards our exorbitant CHOP hospital bills, physician bills and added co-pays. Patricia, Oceana and I thank you for the support.
Most importantly, Oceana is doing quite well. Healthy, (knock on wood) she remains. Oceana's body is finally manufacturing blood products on her own and therefore her central line is scheduled to be removed. Our visits to CHOP will hopefully start to dwindle as we still visit the outpatient clinic a minimum of once a week. We are doing everything we possibly can to try and make sure a relapse does not occur by changing our living space, eating healthier and by having a better awareness of the toxins in our environment. We are also considering alternative preventive methods; we are open minded to keep Oceana healthy. Suggestions are welcomed if anyone wishes to offer any knowledge on preventive practices.
I want to take a moment to thank my wife. Prior to Oceana's admittance into CHOP, Trish had quit working for my company in June of 2009, as many of you already knew. After noticing that our world revolved around CHOP and that my presence was needed there 24/7, Trish immediately stepped in and helped out with my business while maintaining her full time job. In a time of crisis, Trish stepped up and hit a home run as a team and family player knowing exactly what needed to be done. Muchas gracias mi amor.
Sunday, September 12, 2010
Recognizing Recovery Reality
It finally happened. After 75 days as inpatient @ CHOP, Oceana's body produced a high enough ANC to allow us the luxury of "hospital freedom." Monday morning, August 16th., we received the great news. Discharge papers, two scripts and future calendar dates were given to us as we packed what seemed to be enough belongings to fill a small apartment. Having missed the day of our family reunion (Aug. 15th), Oceana and I immediately jumped in the car and headed north for Maine, hoping to catch family members still there. Trish couldn't join us due to work responsibilities. Exhausted, we arrived on Tuesday, midday, and managed to catch Oceana's grandparents, aunts and uncle before they headed back to Hawaii. Mission accomplished! Both Oceana and I were grateful that we managed to see some family, even though we didn't get to see everybody. Those of you that we missed, we really did try to make it; sorry that we missed you.
Monday, August 23, we returned to CHOP for the scheduled CBC. Less I forget to mention, Oceana had needed and gotten platelets in Maine (she had fallen as low as 6.) So, it was not a surprise to learn that she was going to need platelets and red blood after her CBC results on the 23rd. What was surprising to learn was that our doctors had convened at their weekly meeting with the Leukemia & Lymphoma Society team and decided that the cons outweighed the pros for Oceana to endure a fifth cycle of chemo. Relieved, I both accepted and agreed with this decision. Another phase of chemo would seriously compromise Oceana's well being by creating a neutropenic state that could last over 90 days, compromising her immunity and potentially allowing life threatening infections. Since she has achieved remission, I think it is wise to "quit while she's ahead."
Now, Oceana, Patricia and I are recovering from what I call "post traumatic hospital reality." Now that she is "recovered" (haha, not really, as Oceana is still very dependent, receiving both platelets and red blood at least once a week) we have to resume our lives and accept our new reality. The medical bills, our decided relocation in order to be closer to both family and CHOP as well as to live in a non toxic environment (I am convinced that Oceana's condition was caused by environmental factors) and the stress of trying to manage it all while returning to our daily grind. While we were in CHOP during our last stay, it had become routine to go to bed late and sleep til two PM. This always happens towards the end of Oceana's hospital stays. This time, however, it became a bit more difficult to adjust. Three weeks later, we are finally returning to a diurnal internal clock. Still, our reality is hazy as we pick up the pieces of our broken life and continue to try achieve our goals. It will take five years of continued remission before CHOP will declare Oceana cured. I prefer to believe that she is cured now and want to protect her from any and all toxic exposure. So much is at stake here, after all, we are talking about Oceana's life.
I do not have much more to say. I realize that this blog has morphed from Oceana's perspective to mine. She is not into this at this time as she would prefer to play on her ipad, start books and not put them down until she finishes them, play playstation games and interact with family. We want to thank our fantastic families and friends for all of the support we have received and apologize for any misconceptions that may have occurred along the way. This has been a long, intense journey that has not yet ended (still waiting for Oceana to recover completely by making her own platelets and red blood) although we can now see a silver lining etched in the horizon. "Look out my window, what do I see? Crack in the sky and a hand reaching down to me." - David Bowie
Lastly, to our friends at CHOP: Please know that Patricia and I look forward to that New York trip with Ricky for example, and to sharing brick oven pizza by the pool with Sarah, we hope for the complete recovery of all the children whom are enduring treatment or recovering at home. I do not understand why life has created this path for us but know that together we have the strength to see this through. We want to help in every way so please contact us if needed, or if you just need a person to talk to. Thank you for your compassion, advice, sharing of knowledge as well as lending an ear. In the thick of it, only those afflicted can really understand what we have had to endure; We wouldn't want anyone else to have to!
Monday, August 23, we returned to CHOP for the scheduled CBC. Less I forget to mention, Oceana had needed and gotten platelets in Maine (she had fallen as low as 6.) So, it was not a surprise to learn that she was going to need platelets and red blood after her CBC results on the 23rd. What was surprising to learn was that our doctors had convened at their weekly meeting with the Leukemia & Lymphoma Society team and decided that the cons outweighed the pros for Oceana to endure a fifth cycle of chemo. Relieved, I both accepted and agreed with this decision. Another phase of chemo would seriously compromise Oceana's well being by creating a neutropenic state that could last over 90 days, compromising her immunity and potentially allowing life threatening infections. Since she has achieved remission, I think it is wise to "quit while she's ahead."
Now, Oceana, Patricia and I are recovering from what I call "post traumatic hospital reality." Now that she is "recovered" (haha, not really, as Oceana is still very dependent, receiving both platelets and red blood at least once a week) we have to resume our lives and accept our new reality. The medical bills, our decided relocation in order to be closer to both family and CHOP as well as to live in a non toxic environment (I am convinced that Oceana's condition was caused by environmental factors) and the stress of trying to manage it all while returning to our daily grind. While we were in CHOP during our last stay, it had become routine to go to bed late and sleep til two PM. This always happens towards the end of Oceana's hospital stays. This time, however, it became a bit more difficult to adjust. Three weeks later, we are finally returning to a diurnal internal clock. Still, our reality is hazy as we pick up the pieces of our broken life and continue to try achieve our goals. It will take five years of continued remission before CHOP will declare Oceana cured. I prefer to believe that she is cured now and want to protect her from any and all toxic exposure. So much is at stake here, after all, we are talking about Oceana's life.
I do not have much more to say. I realize that this blog has morphed from Oceana's perspective to mine. She is not into this at this time as she would prefer to play on her ipad, start books and not put them down until she finishes them, play playstation games and interact with family. We want to thank our fantastic families and friends for all of the support we have received and apologize for any misconceptions that may have occurred along the way. This has been a long, intense journey that has not yet ended (still waiting for Oceana to recover completely by making her own platelets and red blood) although we can now see a silver lining etched in the horizon. "Look out my window, what do I see? Crack in the sky and a hand reaching down to me." - David Bowie
Lastly, to our friends at CHOP: Please know that Patricia and I look forward to that New York trip with Ricky for example, and to sharing brick oven pizza by the pool with Sarah, we hope for the complete recovery of all the children whom are enduring treatment or recovering at home. I do not understand why life has created this path for us but know that together we have the strength to see this through. We want to help in every way so please contact us if needed, or if you just need a person to talk to. Thank you for your compassion, advice, sharing of knowledge as well as lending an ear. In the thick of it, only those afflicted can really understand what we have had to endure; We wouldn't want anyone else to have to!
Saturday, August 7, 2010
No G-CSF for AML
Where to begin? Oceana growls as 4:30 in the afternoon passes and she still trying to sleep as the nurse comes in to check her vitals (every four hours). Sleep, sleep, sleep... okay, you know, it is a concept that is not half bad. After all, Oceana is free in her mind and is hopefully not dreaming about being bound to a "roller pole", confined to a bed. Do I have the heart to wake her up, well yes! She'll be up until 5 am at this rate and I need to be in the Hamptons by 10:30 am tomorrow! Sleep later, darling, get up for now!
I had written in the previous post that we were scheduled to do a BMA and LP on July 26th. Well, that didn't happen. After reviewing Oceana's previous phases, I discovered a pattern to her recovery. Essentially, she shows ANC at a low number and then the next day, reverts back to zero. During the last phase it took Oceana 8 days for her to establish an upward trend establishing count recovery. On July 25th, I convinced the Docs that we should wait as she had shown an ANC of 28 on July 21st and that according to my calculations would be producing neutraphils any day! Well, this time the resurgence of ANC did not occur until 11 days later. On the 11th day before we had the lab results, I had finally agreed to the BMA and LP as I began to get concerned and felt it was important to know how Oceana's marrow was faring. A very difficult decision to make as Oceana tormented me with "Why am I letting them do this" to her! The reason being that God forbid she was relapsing, how could I justify the delay in letting the Docs get a handle on it, if indeed this was the case. Considering how simple the procedure is, I did not want to be responsible for the guilt that would follow if her condition had worsened due to me delaying the impending treatment. Fortunately, after the results were analyzed, Oceana showed "0" leukemia cells in both her central nervous system and her bone marrow! What a relief.
When we returned to the room, we learned that she had shown an ANC of 20. Excellent! More good news. Finally, that evening when the Docs discussed the results, they suggested G-CSF. This would be administered as a daily shot. I immediately cringed. It was a week ago that I had spoken with two different Docs that had stated they would not be recommending this growth hormone for an AML patient. I couldn't believe what I was hearing! Are you kidding me? The Docs want to administer G-CSF to stimulate white blood cell count, thus enabling us to discharge sooner. However, we would have to come in to outpatient clinic regularly for hemogoblin and platelets as the growth hormone does not do anything for this. Essentially, the G-CSF would allow the hospital to release us earlier but at what risk? It is true that not only does the growth hormone promote white blood cells, but it could also promote myeloid cells. Since Oceana had been clear or myeloid cells before in her CNS (a known sanctuary for myeloid cells) followed by a relapse in her CNS, I am not willing to take the risk of assuming that there are not any myeloid cells left to stimulate!
We will wait for Oceana to recover on her own, thank you!
And as the choice was made Monday, Oceana showed an ANC of 40 on 8/5 and 60 and on 8/7. The upward trend has begun, despite the Docs prediction that her bone marrow was going to take a long while to recover. Oceana may still recover in time to make our family reunion on the 15th!
Below, I have included supporting evidence supporting the fact that G-CSF is not healthy for childhood AML.
Originally published as JCO Early Release 10.1200/JCO.2009.25.9010 on April 20 2010
© 2010 American Society of Clinical Oncology.
Granulocyte Colony-Stimulating Factor (G-CSF) Treatment of Childhood Acute Myeloid Leukemias That Overexpress the Differentiation-Defective G-CSF Receptor Isoform IV Is Associated With a Higher Incidence of Relapse
From the Department of Pediatric Hematology and Oncology and Institute of Cell and Molecular Pathology, Medical School Hannover, Hannover; Pediatric Hematology and Oncology, University of Frankfurt, Frankfurt; Justus-Liebig-University, Department of Pediatric Hematology and Oncology, Giessen; Department of Pediatric Hematology and Oncology, University Children's Hospital, Muenster, Germany; Department of Pediatric Hematology and Oncology, Erasmus MC-Sophia Children's Hospital, Rotterdam, the Netherlands; University Hospital Motol and 2nd Medical School, Charles University, Prague, Czech Republic; and St Anna Kinderspital and Children's Cancer Research Institute, Vienna, Austria.
Corresponding author: Stephanie Ehlers, MD, Pediatric Hematology and Oncology, Medical School Hannover, Carl-Neuberg-Str 1, D-30625 Hannover, Germany; e-mail: ehlers.stephanie@mh-hannover.de.
Purpose This prospective, multicenter Acute Myeloid Leukemia Berlin-Frankfurt-Muenster (AML-BFM) 98 study randomly tested the ability of granulocyte colony-stimulating factor (G-CSF) to reduce infectious complications and to improve outcomes in children and adolescents with acute myeloid leukemia (AML). However, a trend toward an increased incidence of relapses in the standard-risk (SR) group after G-CSF treatment was observed.
Patients and Methods Of 154 SR patients in the AML-BFM 98 cohort, 50 patients were tested for G-CSF receptor (G-CSFR) RNA isoform I and IV expression, G-CSFR cell surface expression, and acquired mutations in the G-CSFR gene.
Results In patients randomly assigned to receive G-CSF after induction, 16 patients overexpressing the G-CSFR isoform IV showed an increased 5-year cumulative incidence of relapse (50% ± 13%) compared with 14 patients with low-level isoform IV expression (14% ± 10%; log-rank P = .04). The level of G-CSFR isoform IV had no significant effect in patients not receiving G-CSF (P = .19). Multivariate analyses of the G-CSF–treated subgroup, including the parameters G-CSFR isoform IV overexpression, sex, and favorable cytogenetics as covariables, revealed the prognostic relevance of G-CSFR isoform IV overexpression for 5-year event-free survival (P = .031) and the 5-year cumulative incidence of relapse (P = .049).
Conclusion Our results demonstrate that children and adolescents with AMLs that overexpress the differentiation-defective G-CSFR isoform IV respond to G-CSF administration after induction, but with a significantly higher incidence of relapseFrom the Leukemia Research
"In recent years, many cytokines have been defined and some of them used clinically. In hematological malignancies, cytokines, including granulocyte colony-stimulating factor (G-CSF), have been widely used for leukopenia after chemotherapy. However, in acute myelogenous leukemia (AML), some leukemic cells may be induced to proliferate by these cytokines and they must be used with care. In this study, we have investigated cell reactivity and proliferation with G-CSF, granulocyte-macrophage colony-stimulating factor (GM-CMF), macrophage colony-stimulating factor (M-CSF), stem cell factor (SCF) and thrombopoietin (TPO) in cases of AML. We have also investigated the reactivity of some myeloid leukemia cell lines to TPO. G-CSF, GM-CSF, M-CSF, SCF and TPO caused proliferation of leukemic cells in 25%, 58.3%, 8.3%, 21.1% and O% of cases, respectively.
Because of this result, the use of G-CSF in AML should be regarded as potentially hazardous."
Leukemia Research
Volume 22, Issue 6, June 1998, Pages 557-560
Sunday, July 25, 2010
52 Days In, Still No Count Recovery
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.
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.
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.
Monday, June 7, 2010
Introducing Oceana
Hello All,
As all of you aready know, Oceana Marks Azar has been diagnosed with AML Leukemia. The purpose of this blog, is to allow Oceana a direct medium to communicate and express how she feels with all of you directly. We are going to make an attempt at therapeutic expression through blogging!
Oceana now has the floor:
"UGGGHHHH", Oceana says. "Get me out of here!" Oceana exclaims sitting on her bed, hooked up to fluids after finishing her last dose of Ara C chemo for this phase. Earlier today, she had an LP (lumbar puncture). Oceana states that this was "suckish, crappy" when discussing how it felt. Prior to the LP procedure, Oceana had anti-anxiety meds that apparently did not make the experience any better. Annie from childlife was there with an intern to try and soothe Oceana. Oceana, with fear in her eyes, adamantly stood outside the entrance to the oncology day hospital (where the procedure was performed) in tears stating "no"! Both Annie and Dad tried to explain the importance of her being there, hoping to reason the fear away from Oceana. After all, the lumbar puncture is not only to keep us informed that the leukemia cells stay eradicated and therefore prove that the treatments are working but to also administer a coctail of three different chemos directly into the spine which are to help cure Oceana, keeping the leukemia in a state of remission. Oceana was not hearing this. All she could think of was that she did not want to go under the anesthesia as well as that she didn't want to be awake for the puncture. Oceana was asking for the impossible! Fear in her eyes, Dad carried her into the procedure room where the anesthesiologist awaited with the doctor who performed the puncture. Surprisingly, Annie and the intern were allowed to stay in the procedure room after Oceana fell asleep but Dad was told to leave. Dad waited anxiously outside the procedure room until the door opened and Oceana was taken to a recovery room to "awaken." The procedural nurse determined that Oceana would be asleep for thirty minutes. Dad knew better as Oceana always awakens from this procedure in about ten minutes, exhibiting emergence delirium. Fortunately, the delirium was not as bad today as it has been at other times. Annie and Dad held Oceana's hands as she slowly came back to her senses. Wow, anesthesia is powerful.
"Hungry Dad, but don't leave me!" Kids cuisine to the rescue, since Oceana can't stand room service hospital food. Now, dad just needs to escape the Oceana death grasp to get to the microwave. Dad, don't go!
Oceana is now asking to be broken out of the hospital with a sledgehammer, a chainsaw and a motorcycle. Personally, she should just walk out the front door, but hey that wouldn't be any fun! The phone is ringing, it's uncle Louis on the phone! Make sure he knows that he will be cherry pied, next time he visits. Oceana will hold him to this! "Please uncle Louis, teleport me to the beach" Oceana exclaims. Afterall, why can't you send people if you can send pictures? "Don't hang up, no, don't go, what do you mean you have things to do? I don't!"
"I'm bored" Oceana cries, "Good night." Not really though, Oceana's no where near her desired bed time. Mom will be here soon.
As all of you aready know, Oceana Marks Azar has been diagnosed with AML Leukemia. The purpose of this blog, is to allow Oceana a direct medium to communicate and express how she feels with all of you directly. We are going to make an attempt at therapeutic expression through blogging!
Oceana now has the floor:
"UGGGHHHH", Oceana says. "Get me out of here!" Oceana exclaims sitting on her bed, hooked up to fluids after finishing her last dose of Ara C chemo for this phase. Earlier today, she had an LP (lumbar puncture). Oceana states that this was "suckish, crappy" when discussing how it felt. Prior to the LP procedure, Oceana had anti-anxiety meds that apparently did not make the experience any better. Annie from childlife was there with an intern to try and soothe Oceana. Oceana, with fear in her eyes, adamantly stood outside the entrance to the oncology day hospital (where the procedure was performed) in tears stating "no"! Both Annie and Dad tried to explain the importance of her being there, hoping to reason the fear away from Oceana. After all, the lumbar puncture is not only to keep us informed that the leukemia cells stay eradicated and therefore prove that the treatments are working but to also administer a coctail of three different chemos directly into the spine which are to help cure Oceana, keeping the leukemia in a state of remission. Oceana was not hearing this. All she could think of was that she did not want to go under the anesthesia as well as that she didn't want to be awake for the puncture. Oceana was asking for the impossible! Fear in her eyes, Dad carried her into the procedure room where the anesthesiologist awaited with the doctor who performed the puncture. Surprisingly, Annie and the intern were allowed to stay in the procedure room after Oceana fell asleep but Dad was told to leave. Dad waited anxiously outside the procedure room until the door opened and Oceana was taken to a recovery room to "awaken." The procedural nurse determined that Oceana would be asleep for thirty minutes. Dad knew better as Oceana always awakens from this procedure in about ten minutes, exhibiting emergence delirium. Fortunately, the delirium was not as bad today as it has been at other times. Annie and Dad held Oceana's hands as she slowly came back to her senses. Wow, anesthesia is powerful.
"Hungry Dad, but don't leave me!" Kids cuisine to the rescue, since Oceana can't stand room service hospital food. Now, dad just needs to escape the Oceana death grasp to get to the microwave. Dad, don't go!
Oceana is now asking to be broken out of the hospital with a sledgehammer, a chainsaw and a motorcycle. Personally, she should just walk out the front door, but hey that wouldn't be any fun! The phone is ringing, it's uncle Louis on the phone! Make sure he knows that he will be cherry pied, next time he visits. Oceana will hold him to this! "Please uncle Louis, teleport me to the beach" Oceana exclaims. Afterall, why can't you send people if you can send pictures? "Don't hang up, no, don't go, what do you mean you have things to do? I don't!"
"I'm bored" Oceana cries, "Good night." Not really though, Oceana's no where near her desired bed time. Mom will be here soon.
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