The stress of fever watching all last week finally peaked not even 12 hours after my last blog post. Ellie woke up on Thursday morning with close to no energy and running right at 100.3°, the exact line of hospital worthy fever vs stay at home fever (if you trust our thermometer). This is where the logical side of my brain really pisses off my emotional side. Kind of like the angel & devil ducks sitting to the right and left of Donald's head in those old Disney cartoons. My scientific mind, for better for worse, immediately thinks "Given the standard deviation of a group of readings with a store bought thermometer and the fact that it likely isn't calibrated very well....you know she is well above 100.3, go to the hospital - NOW" while the emotional side is more like, "we called the doc and she said it must be above 100.3, she believes she is fine, so let her hang out and be at home where we know she is happier". Logic often loses those discussions. So, I leave for work and don't even make it off the freeway before Polly calls to say she is now completely sick to her stomach. Emotions too often get in the way of logic but logic doesn't know what it is like to have a 2 year old with cancer.
Polly took Ellie on Thursday to the Stanford ER, which is where all our hospital stays have to begin by the rules. The only bad part of that is the ER isn't nearly as comfortable as the Bass center and she is usually at her sickest when we are there, so perhaps excuse us if we lack a fondness for the place. 6 hours later, Ellie was moved into where we currently reside in the Bass center. Her queasy stomach was likely just the first major sign we've had in Consolidation that the nausea from the build up of many chemo drugs finally got the best of her. They immediately run a series of tests on her blood (mainly) and a harsh test up her nose for any traces of bacteria (and some known viruses) because they aim to figure out exactly what bug it might be. She came back positive for the Metanuma virus. Our dear old friend from last winter which Timmy came down with and eventually led to his pneumonia. This really couldn't have been worse timing because her blood counts just bottomed out. She has virtually no white blood cells in her system right now....so little in fact, the blood lab cannot get an adequate number of them together to calculate an ANC level (immune system rating). Her blood counts will almost certainly be down for several days now and we have one more round of chemo scheduled on Tuesday to end our first half of the 8 week Consolidation sub phase. So, the harsh reality if it all is that they can treat it, but we're going to be staying at LPCH for at least a week or more.
Her chest has remained clear even though she has a cough, thankfully, so we don't even have to go there right now. She has been pretty unhappy from her digestive system being unsettled too. The Vincristine shot from Tuesday really wreaks havoc on this part of her. We come to find out today, she also picked up a bacterial infection known as "C-Diff" which explains why her system continues to tie her in knots. Friday and Saturday were not good days. Her energy has been so low that she doesn't want to do anything during large parts of the day. This is the part of cancer I hate the most, to see her like this. Nobody deserves this. Nobody.
Today (Sunday), she did turn a corner, her cough was better, and she was lively enough to play/laugh with me and give me at least one solid "GoalASO". We played with some play dough while watching "Finding Nemo" about 5 times....though she now tells me to fast forward through the part with the shark. Trust me, he has now been found. She even blew me a kiss as Timmy and I left this evening. Polly and I are very tired, but she finds a way to keep everyone's spirits up.
Ellie has to stay isolated to the room because of the type of virus she caught in fairness to the other cancer patients in the bass center, which means Polly cannot leave the room either. So, if you want to stop by to say hello, please do, Polly is welcoming all visitors. The stress of this all can be very overwhelming, but I think there is a small silver lining with the hospital stays because she is being watched 24/7 by all these great nurses and doctors. Thus, we don't have to go to bed at night in our own home worrying about a fever spike in the adjacent room like we did most of last week. That is, for the most part, pretty reassuring.
At the top of Coach Wooden's Pyramid of Success is the idea of Competitive Greatness. It is the all encompassing phrase that brings together every element below it with the hope that they all come to the forefront in a collective unison when the opportunity presents itself. Coach Wooden described it as "Being at your best, when you best is needed". This is without a doubt something I have found to be unbelievably difficult with an experience of this magnitude. I guess that's the way it should be. There is no way to be on top of this situation every day. We must work at all the different things that need to be done and be able to ask at the end of the day - Have I done everything I can possibly do? I Hope so. To be able to emphatically answer with an unwavering confirmation would logically be the ultimate "best", right? Unfortunately, emotions make that answer brutally hard on weekends like this. I'm guessing Coach Wooden's daughter blew him a kiss or two from the stands on many an occasion. So, perhaps today's goodbye was Ellie's way of answering the question for me. How could I not come back tomorrow with anything less than my very best? She deserves nothing less.
Sunday, August 28, 2011
Wednesday, August 24, 2011
Better Days - Day 57
I am trying to wrap my head around how I feel this week and am struggling to find exact words for a quality description. It has been exhausting to say the least. Ironic too, I suppose, because I should probably be heading to bed now instead of typing but what usually happens is that too many thoughts swirl around once the lights go out and so staying up a bit with this blog offers some closure to the day. Anything that helps provide some extra strength for tomorrow is invaluable. So, here we are.
School started for me this week and the jump (more like leap) from our version of the gentle summer swagger to sprinting on the weekly treadmill has begun. In the midst of all of this craziness, I've had these brief yet very poignant moments occur much more frequently in the last couple of months. IMaybe even as much as once per day. These are moments when you hear or see something that stops you in your tracks because it grabs your full attention for a brief moment in time. In that moment, it either speaks to you or provides tremendous meaning. Today it was a song on the radio that came on exactly when I turned my car on to drive home from work. Every word was crystal clear and my emotions were stirred almost like I was hearing it for the first time. I've probably heard it 1000 times over and likely changed the channel a few times when not in the mood in the past....but today it provided a little bit of clarity, a little bit of relief, and a sentiment of "Don't worry" I think I need to remind myself of more often.
Ellie has had a rough week. Three straight days of out-patient visits with our shortest one being 4 hours which was today. I'm not sure we're done quite yet either with potential labs to do on Friday. We knew heading into last weekend that her blood counts were starting to go way down. Her Hemoglobin was just above 8 on Friday and platelets had fallen from 300 to 150 in just three days. Nice to know the Chemo is working, I suppose. So, come Monday she was below 8 for Hemoglobin and required a transfusion. The routine is tough to anticipate on days like this because you head into the lab not knowing quite what to expect from her blood counts, do the labs, wait for results, and then if she needs a transfusion it sets off this paperwork process of ordering the blood, delivering the blood and then transfusing....all in all about an 8 hour day. Tuesday was our weekly chemo day which El started with an LP procedure for a spinal shot of Methotrexate (this was #3 of 4 for Consolidation). After she was in recovery and ready for her two shots of PEG-A and IV push of Vincristine, there was more waiting for it to be correctly ordered and delivered. The PEG-A shots are done through her legs and thus require a 2 hour post shot observation because of the high chance of an allergic reaction. Today she had to go back for a platelet transfusion as that had dropped all the way from 150 on Friday to 7 this morning. On top of this, she has had Timmy's cold all week with a not-so-nice cough and a low grade fever of about 99.7 (just barely below the limit to head over to the ER). To say we are on pins and needles about possibly rushing to the hospital for a fever spike is putting it mildly. This part of the journey, dealing with regular cold bugs in the midst of all the chemo, has been the worst part for me thus far.
The Saint in all of this outside of Ellie being her usually brave self has been Polly. She has persevered through the long days at LPCH to allow me to teach the first few days of the new school year and kept up her strength to endure the accumulation of paperwork setbacks at the hospital. She is my rock and my teammate and every show of strength I see from her fills me with faith that we both will eventually see Better Days. I think we both feel sometimes like we're dodging bullets around here (like today where this mild fever is thankfully staying 0.7 degrees lower than the ER cutoff line), but at the end of this day....Ellie is sleeping soundly and we were able to get through another step of treatment.
Just as a refresher (I get asked this alot), Ellie's treatment of about 2.5 years has three phases - Induction (1 month), Consolidation (6-9 months), and Long Term Maintenance (2 years). She has completed Induction and now is in Consolidation. The Consolidation phase has three sub phases - Consolidation (I know the sub phase name is the same as the general phase name) (8 weeks), Interim Maintenance (8 weeks), and Delayed Intensification (8 weeks). We are currently in week 3 of Consolidation. She has one more day of Chemo for the first half of Consolidation next Tuesday and then we will have to make blood counts before moving on to the second four weeks of the sub phase. Her nausea levels have increased tremendously but luckily the Zofran we have to give her acts quickly. While we wait for the Zofran
Tomorrow is Thursday and a brief 24 hr break from the hospital. If it is even a slightly better day than today....that will be enough for me. We are praying this cough goes away very soon. Her ANC levels will likely be neutropenic by the weekend and we all have no desire to go in-patient for an entire week. We shall see. Time now to rest and recharge. I'll leave you with the song lyrics from my car ride home today as my prayer tonight for Better Days in the hopefully not so distant future. Please keep praying for my little girl - she means everything to us.
School started for me this week and the jump (more like leap) from our version of the gentle summer swagger to sprinting on the weekly treadmill has begun. In the midst of all of this craziness, I've had these brief yet very poignant moments occur much more frequently in the last couple of months. IMaybe even as much as once per day. These are moments when you hear or see something that stops you in your tracks because it grabs your full attention for a brief moment in time. In that moment, it either speaks to you or provides tremendous meaning. Today it was a song on the radio that came on exactly when I turned my car on to drive home from work. Every word was crystal clear and my emotions were stirred almost like I was hearing it for the first time. I've probably heard it 1000 times over and likely changed the channel a few times when not in the mood in the past....but today it provided a little bit of clarity, a little bit of relief, and a sentiment of "Don't worry" I think I need to remind myself of more often.
Ellie has had a rough week. Three straight days of out-patient visits with our shortest one being 4 hours which was today. I'm not sure we're done quite yet either with potential labs to do on Friday. We knew heading into last weekend that her blood counts were starting to go way down. Her Hemoglobin was just above 8 on Friday and platelets had fallen from 300 to 150 in just three days. Nice to know the Chemo is working, I suppose. So, come Monday she was below 8 for Hemoglobin and required a transfusion. The routine is tough to anticipate on days like this because you head into the lab not knowing quite what to expect from her blood counts, do the labs, wait for results, and then if she needs a transfusion it sets off this paperwork process of ordering the blood, delivering the blood and then transfusing....all in all about an 8 hour day. Tuesday was our weekly chemo day which El started with an LP procedure for a spinal shot of Methotrexate (this was #3 of 4 for Consolidation). After she was in recovery and ready for her two shots of PEG-A and IV push of Vincristine, there was more waiting for it to be correctly ordered and delivered. The PEG-A shots are done through her legs and thus require a 2 hour post shot observation because of the high chance of an allergic reaction. Today she had to go back for a platelet transfusion as that had dropped all the way from 150 on Friday to 7 this morning. On top of this, she has had Timmy's cold all week with a not-so-nice cough and a low grade fever of about 99.7 (just barely below the limit to head over to the ER). To say we are on pins and needles about possibly rushing to the hospital for a fever spike is putting it mildly. This part of the journey, dealing with regular cold bugs in the midst of all the chemo, has been the worst part for me thus far.
The Saint in all of this outside of Ellie being her usually brave self has been Polly. She has persevered through the long days at LPCH to allow me to teach the first few days of the new school year and kept up her strength to endure the accumulation of paperwork setbacks at the hospital. She is my rock and my teammate and every show of strength I see from her fills me with faith that we both will eventually see Better Days. I think we both feel sometimes like we're dodging bullets around here (like today where this mild fever is thankfully staying 0.7 degrees lower than the ER cutoff line), but at the end of this day....Ellie is sleeping soundly and we were able to get through another step of treatment.
Just as a refresher (I get asked this alot), Ellie's treatment of about 2.5 years has three phases - Induction (1 month), Consolidation (6-9 months), and Long Term Maintenance (2 years). She has completed Induction and now is in Consolidation. The Consolidation phase has three sub phases - Consolidation (I know the sub phase name is the same as the general phase name) (8 weeks), Interim Maintenance (8 weeks), and Delayed Intensification (8 weeks). We are currently in week 3 of Consolidation. She has one more day of Chemo for the first half of Consolidation next Tuesday and then we will have to make blood counts before moving on to the second four weeks of the sub phase. Her nausea levels have increased tremendously but luckily the Zofran we have to give her acts quickly. While we wait for the Zofran
Tomorrow is Thursday and a brief 24 hr break from the hospital. If it is even a slightly better day than today....that will be enough for me. We are praying this cough goes away very soon. Her ANC levels will likely be neutropenic by the weekend and we all have no desire to go in-patient for an entire week. We shall see. Time now to rest and recharge. I'll leave you with the song lyrics from my car ride home today as my prayer tonight for Better Days in the hopefully not so distant future. Please keep praying for my little girl - she means everything to us.
"Better Days" by The Goo Goo Dolls
And you asked me what I want this year
and I try to make this kind and clear
just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
and designer love and empty things
just a chance that maybe we'll find better days
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
I need some place simple where we could live
and something only you can give
and that's faith and trust and peace while we're alive
and the one poor child who saved this world
and there's ten million more who probably could
if we all just stopped and said a prayer for them
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
I wish everyone was loved tonight
and somehow stop this endless fight
just a chance that maybe we'll find better days
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
'cause tonight's the night the world begins again
and I try to make this kind and clear
just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
and designer love and empty things
just a chance that maybe we'll find better days
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
I need some place simple where we could live
and something only you can give
and that's faith and trust and peace while we're alive
and the one poor child who saved this world
and there's ten million more who probably could
if we all just stopped and said a prayer for them
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
I wish everyone was loved tonight
and somehow stop this endless fight
just a chance that maybe we'll find better days
So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again
'cause tonight's the night the world begins again
**UPDATE (Thurs Morning) - Ellie was admitted to the hospital this morning with a higher fever. Please pray this is a quick stay....
Friday, August 19, 2011
Our Awesome Little Girl - Day 52
This morning Ellie had her port accessed for the first time. Originally they were going to wait until a week after the surgery to access it so that the area could heal, but they changed their minds and decided she needed to have labs drawn before the weekend. They sent us home with some numbing cream to put on the port site an hour before we came in. So this morning amongst all the chaos of Jeff trying to get to school, Timmy getting his nebulizer treatment (he's had a fever and a cold) and Ellie getting her morning meds we got the cream on and were ready to go.
Upon arriving at the clinic they called the child life specialist to come and help as I guess accessing the port for the first time can be quite traumatizing for some kids. Luckily Ellie was in an awesome mood, cruising around the clinic waiting room telling me all the animals on the walls, including Possum which seems to be a new favorite to say. After a little wait, we go into the lab room, I take off her dress and we look at the port site only to see the plastic and cream had slipped over to the center of her chest and was no longer on the port site at all. The nurse and child life specialist looked at me and said, well it will only be a quick poke. I'm thinking oh geez this is not going to be good. The child life specialist is blowing bubbles trying to distract Ellie, I'm holding her on my lap keeping her hands down, and the nurse is coming with the needle. By now Ellie has lost all interest in the bubbles and only wants to watch whats about to happen to her, and poke the needle goes in and it's done. The nurse starts drawing the blood and Ellie sits there smiling and watching what's going on. Everyone was shocked by our brave little 2 year old. She handled it like a champ. We are so proud of her. Her strength, smile, and attitude continue to amaze us everyday.
We waited around and the blood work came back and everything is holding steady, so we were sent home to enjoy the weekend. We go back Monday morning, and they think she will likely need a transfusion then, but for now it's on to our water table fun!
Administrative Note - For those of you who want to get an email when we update the blog, we've added the follow by email function. If you enter your email in, then the site will let you know when we post.
Have a great weekend!
Upon arriving at the clinic they called the child life specialist to come and help as I guess accessing the port for the first time can be quite traumatizing for some kids. Luckily Ellie was in an awesome mood, cruising around the clinic waiting room telling me all the animals on the walls, including Possum which seems to be a new favorite to say. After a little wait, we go into the lab room, I take off her dress and we look at the port site only to see the plastic and cream had slipped over to the center of her chest and was no longer on the port site at all. The nurse and child life specialist looked at me and said, well it will only be a quick poke. I'm thinking oh geez this is not going to be good. The child life specialist is blowing bubbles trying to distract Ellie, I'm holding her on my lap keeping her hands down, and the nurse is coming with the needle. By now Ellie has lost all interest in the bubbles and only wants to watch whats about to happen to her, and poke the needle goes in and it's done. The nurse starts drawing the blood and Ellie sits there smiling and watching what's going on. Everyone was shocked by our brave little 2 year old. She handled it like a champ. We are so proud of her. Her strength, smile, and attitude continue to amaze us everyday.
We waited around and the blood work came back and everything is holding steady, so we were sent home to enjoy the weekend. We go back Monday morning, and they think she will likely need a transfusion then, but for now it's on to our water table fun!
Administrative Note - For those of you who want to get an email when we update the blog, we've added the follow by email function. If you enter your email in, then the site will let you know when we post.
Have a great weekend!
Wednesday, August 17, 2011
Gratitude - Day 50
Ellie made it through her port insertion surgery and chemotherapy on Tuesday like a super star. While there were a few delays which we have come to expect with LPCH, all in all it was a fairly straight forward day and we all made it home before lunch and nap time. She had a subcutaneous catheter placed in her arm so that we can give her chemo shots for the rest of the week at home. While Jeff has taken over the crushing and dissolving of the 6-MP, I have tackled giving the shots and luckily it has gone far better than expected. The catheter allows us to insert a needle into this tiny tube without poking her, so the only real pain she feels is when the medicine goes in. That being said, she sees me coming with a huge needle and isn’t too happy, but luckily today I was able to hit the “sweet spot” as the training nurse described it fairly quickly and get the medicine administered.
In the next week or so we expect her blood counts to start falling as a result of the chemo she is now getting. This will likely mean blood transfusions, hopefully on an outpatient basis. In the meantime she and Timmy are looking forward to this weekend as we have promised them that by then Ellie’s port insertion will have healed and the catheter will be taken out of her arm so they can play with their water table and the spray bottles that they have been asking about every day since seeing our neighbor boys playing with them. They will also get to play in the bath together again for the first time in almost 2 months which will certainly be a treat for everyone (including Jeff and I who will no longer have to bathe them separately for fear of Ellie’s arm getting wet).
Throughout the last seven weeks, our family has been showered with love and kindness from friends, family and even some people who don’t know us personally. We couldn’t be making it through this without all of the support we have received. We are so appreciative of all of the texts, emails, and phone calls. While I haven’t been able to keep up individually thanking people for all of the dinners and groceries we have received, please know we are so grateful. I think there would have been multiple nights where Jeff and I may have forgotten to eat but for the fact that a delicious home cooked meal was sitting in our fridge. Ellie and Timmy have been showered with toys and art supplies which have been a wonderful distraction at the hospital and at home. From the Serra community’s support, to our dear friends who asked that in lieu of gifts at their own twins 2nd birthday party a donation be made towards Ellie’s medical bills, to the photographer Aika Cardin who so graciously gifted us all of the photographs we had taken immediately before Ellie’s diagnosis, to our friends at The Sitting Tree organizing the “Ellie Get Well-ie” event we are forever grateful. But mostly we thank you for your continued prayers for Ellie to be healed. We have faith that there are great things in store for her ahead.
As our friends Natalie and Lily say, keep praying for miracles…they do happen.
Sunday, August 14, 2011
ASO Moments - Day 47
I'm sure we are experiencing a very common occurrence in the lives of two year olds. Those stunningly poignant moments when the English language comes to them near instantaneously while in the midst of using every ounce of energy they have to spit out a new word for the very first time with of course crystal clear clarity (and a little extra saliva). We've been showing both T & E how to kick a mini soccer ball over the last couple of months and with the evolution of language, we now have added a louder volume in the living room to the beautiful game. I got Timmy to raise his arms in the air after each kick and yell "GOOOOOOLLLL!" and thought it was impressive enough. Polly very wisely and independent of my practice session told Ellie at some point the more proper exclamation was "GOALASO!" (I mean it brings a wee tear to my eye). Ellie, still finding her way with multiple syllable words, now runs around kicking the ball proclaiming "ASO!" with complete and total jubilee. There are few things better in sport than what that word, when it occurs, can mean to an individual, a team, a country, and I do dare say an entire culture. There are even fewer better things in life than seeing a girl in Ellie's situation find the purest form of joy from some activity in her day that radiates in this concise proclamation.
Last Tuesday's marathon day at LPCH went pretty well. Her procedure for the LP, her chemo injections, and her time sitting for hours while getting hydrating fluids did not slow her down a bit. The side effects set in over time, so I do not believe we have seen everything we are going to see quite yet with this phase since her energy has only taken a minor dip this week (and only in small spurts at that before recovering nicely). We've been blessed with a pretty good last week; however, the few downward spirals she's had in certain moments can be fast and require a lot of patience (difficult to have when it is the end of the day for us). Little things set her off, we believe, when she is more tired than anything else. Something as simple as not having the correct animal on her plate for her food that she wanted or Timmy taking something from her. The biggest side effect we are on the lookout for right now is nausea. So, the struggle Polly and I have is trying to decipher the code of her sometimes ear piercing screaming simply because it is nearly impossible right now to tell whether her tummy doesn't feel good due to the drugs or she is simply stating, "I am 2, people, and thus find the world extremely annoying right now for no apparent reason - WHY DON'T YOU UNDERSTAND THAT" We try, El, we try. We have found doing whatever it takes to keep her asleep at nap time has led to two and a half hour naps where she wakes up refreshed, smiling from ear to ear, and ready to find her next "ASO" moment.
Also on Tuesday we signed Ellie up for the Beads of Courage program through LPCH. It basically is an accumulation over time of different color beads that get put on a long string and will serve as a reminder to her as she gets older of everything she has been through and accomplished since she was diagnosed. Almost all nurses and staff folks in the Bass center have beads ready to give out when you earn them. There are 18 different color beads in all. To name a few and what they mean - beige is for bone marrow aspirations, white is for a day of chemo, blue is for a clinic visit, yellow is for days served in-patient (she has 20 yellow beads in all now), red is for receiving a transfusion, brown is for hair loss, dark green is for lumbar punctures, etc. Since we signed up 40+ days into her treatment, we were able to tally up all of the things she has already been through and receive the beads she has earned to date - 70 total thus far including the Orange bead which she'll earn this next Tuesday for her Port insertion surgery.
Ellie goes back for a quick set of blood work labs tomorrow ahead of her port surgery on Tuesday. She won't need to make counts for the surgery to go on but they will do weekly checks now of her cell count and platelets. The chemo in this phase will begin to lower them substantially and the labs will determine when/if she needs a transfusion to help things along. Tuesday's surgery has been scheduled for 7 in the morning, so we will be at LPCH by 6:15am. Whenever they have anesthesia involved, they try to get everything done that is needed for the day (I actually think it is so great how the various departments of the hospital coordinate for this - It is what is best for Ellie and thank you GOD for this being their #1 priority when it comes to scheduling at a giant hospital). During the surgery she will have her PICC line removed, her port put in, the 2nd of 4 lumbar punctures for this month, and her chemo injections for the day all before she wakes up. The port will be placed in her upper chest just under her skin layer and all future chemo treatments meant to be given intravenously will go through it.
There are two chemo drugs Polly and I have to give her at home now. One drug, so named A-RAC, is given three times a week through her PICC (soon to be Port) line relatively easily in about 3 minutes time. The other one however, an oral medication called Mercaptopurine or 6MP for short, has proved to be difficult. It is a highly toxic (to us) pill about the size of a Tylenol. Given that Ellie won't be swallowing pills for some time yet, we have to conjure up a way to get it into her system and do so while she is half asleep because it must be done at night at least 2 hours removed from dinner (thus she is already asleep in bed). The Pharmacist gave me the bottle, warned of its dangers to other folks aside of Ellie, and then said, "oh yeah its readily soluble in water, just add a couple drops, put it in a syringe, and you'll be good to go." Umm, no. I would classify it as SLIGHTLY soluble with small pieces going everywhere when it is either cut or crushed. We have done four nights thus far and have tried a different technique each night to get the thing dissolved, with each technique taking about an hour, and us coming to the full conclusion that with the methods we were told to use, there is no way to get 100% of the pill into a water/cherry syrup solution or suspended enough so that there is no residue left over while standing over the crib in the dark. You would think the pharmacy is requiring in some indirect way that every parent have a Chemistry degree to handle this?!! (Wait a minute....) This is the drug we will be giving once a day for two years when the Maintenance phase starts in the spring, so I need and am vowing to simplify this method....and then perhaps the pharmacist and I will have a chat.
I think we love the little victories everyday more than anything right now, be it cancer related or just watching the two of them grow. As a teacher, I and all of my colleagues look for the little moments every day where a potential breakthrough may occur. It can be very subtle but you just know it when it happens. One "Ah-HA" moment often makes the day complete despite maybe 10 something difficulties that surrounded it. With it comes confidence and justification that this moment happened for a very big reason. We were all playing outside our front door yesterday with their glider bikes and various toys. Ellie had gone inside for a minute while Timmy started kicking a golf ball on the pavement towards me. He would chase it and attempt to throw it back though at this point the ball only gets to me if he throws while facing the other direction. Out comes Ellie, grinning like the Cheshire cat, with her shiny new pink soccer ball several of the Serra Soccer players gave her (signed and everything!), promptly puts it down and places a pass with her right foot straight in my direction. As it has barely a second to touch my foot, she yells "ASOOOOOO!" *sigh* She's surviving, she's beautiful, and she's happy. I hope I get another ASO moment tomorrow.
Last Tuesday's marathon day at LPCH went pretty well. Her procedure for the LP, her chemo injections, and her time sitting for hours while getting hydrating fluids did not slow her down a bit. The side effects set in over time, so I do not believe we have seen everything we are going to see quite yet with this phase since her energy has only taken a minor dip this week (and only in small spurts at that before recovering nicely). We've been blessed with a pretty good last week; however, the few downward spirals she's had in certain moments can be fast and require a lot of patience (difficult to have when it is the end of the day for us). Little things set her off, we believe, when she is more tired than anything else. Something as simple as not having the correct animal on her plate for her food that she wanted or Timmy taking something from her. The biggest side effect we are on the lookout for right now is nausea. So, the struggle Polly and I have is trying to decipher the code of her sometimes ear piercing screaming simply because it is nearly impossible right now to tell whether her tummy doesn't feel good due to the drugs or she is simply stating, "I am 2, people, and thus find the world extremely annoying right now for no apparent reason - WHY DON'T YOU UNDERSTAND THAT" We try, El, we try. We have found doing whatever it takes to keep her asleep at nap time has led to two and a half hour naps where she wakes up refreshed, smiling from ear to ear, and ready to find her next "ASO" moment.
Also on Tuesday we signed Ellie up for the Beads of Courage program through LPCH. It basically is an accumulation over time of different color beads that get put on a long string and will serve as a reminder to her as she gets older of everything she has been through and accomplished since she was diagnosed. Almost all nurses and staff folks in the Bass center have beads ready to give out when you earn them. There are 18 different color beads in all. To name a few and what they mean - beige is for bone marrow aspirations, white is for a day of chemo, blue is for a clinic visit, yellow is for days served in-patient (she has 20 yellow beads in all now), red is for receiving a transfusion, brown is for hair loss, dark green is for lumbar punctures, etc. Since we signed up 40+ days into her treatment, we were able to tally up all of the things she has already been through and receive the beads she has earned to date - 70 total thus far including the Orange bead which she'll earn this next Tuesday for her Port insertion surgery.
Ellie goes back for a quick set of blood work labs tomorrow ahead of her port surgery on Tuesday. She won't need to make counts for the surgery to go on but they will do weekly checks now of her cell count and platelets. The chemo in this phase will begin to lower them substantially and the labs will determine when/if she needs a transfusion to help things along. Tuesday's surgery has been scheduled for 7 in the morning, so we will be at LPCH by 6:15am. Whenever they have anesthesia involved, they try to get everything done that is needed for the day (I actually think it is so great how the various departments of the hospital coordinate for this - It is what is best for Ellie and thank you GOD for this being their #1 priority when it comes to scheduling at a giant hospital). During the surgery she will have her PICC line removed, her port put in, the 2nd of 4 lumbar punctures for this month, and her chemo injections for the day all before she wakes up. The port will be placed in her upper chest just under her skin layer and all future chemo treatments meant to be given intravenously will go through it.
There are two chemo drugs Polly and I have to give her at home now. One drug, so named A-RAC, is given three times a week through her PICC (soon to be Port) line relatively easily in about 3 minutes time. The other one however, an oral medication called Mercaptopurine or 6MP for short, has proved to be difficult. It is a highly toxic (to us) pill about the size of a Tylenol. Given that Ellie won't be swallowing pills for some time yet, we have to conjure up a way to get it into her system and do so while she is half asleep because it must be done at night at least 2 hours removed from dinner (thus she is already asleep in bed). The Pharmacist gave me the bottle, warned of its dangers to other folks aside of Ellie, and then said, "oh yeah its readily soluble in water, just add a couple drops, put it in a syringe, and you'll be good to go." Umm, no. I would classify it as SLIGHTLY soluble with small pieces going everywhere when it is either cut or crushed. We have done four nights thus far and have tried a different technique each night to get the thing dissolved, with each technique taking about an hour, and us coming to the full conclusion that with the methods we were told to use, there is no way to get 100% of the pill into a water/cherry syrup solution or suspended enough so that there is no residue left over while standing over the crib in the dark. You would think the pharmacy is requiring in some indirect way that every parent have a Chemistry degree to handle this?!! (Wait a minute....) This is the drug we will be giving once a day for two years when the Maintenance phase starts in the spring, so I need and am vowing to simplify this method....and then perhaps the pharmacist and I will have a chat.
I think we love the little victories everyday more than anything right now, be it cancer related or just watching the two of them grow. As a teacher, I and all of my colleagues look for the little moments every day where a potential breakthrough may occur. It can be very subtle but you just know it when it happens. One "Ah-HA" moment often makes the day complete despite maybe 10 something difficulties that surrounded it. With it comes confidence and justification that this moment happened for a very big reason. We were all playing outside our front door yesterday with their glider bikes and various toys. Ellie had gone inside for a minute while Timmy started kicking a golf ball on the pavement towards me. He would chase it and attempt to throw it back though at this point the ball only gets to me if he throws while facing the other direction. Out comes Ellie, grinning like the Cheshire cat, with her shiny new pink soccer ball several of the Serra Soccer players gave her (signed and everything!), promptly puts it down and places a pass with her right foot straight in my direction. As it has barely a second to touch my foot, she yells "ASOOOOOO!" *sigh* She's surviving, she's beautiful, and she's happy. I hope I get another ASO moment tomorrow.
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