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.
Monday, June 28, 2010
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.
Subscribe to:
Posts (Atom)