We got the news we had hoped and prayed for today - Ellie's MRD test of her marrow came back with a 0% leukemia cell count meaning she is now officially in remission! There are days in your life that can bring you to your knees both in sorrow and in joy....and this most certainly is the latter. Click HERE for a sampling of our reaction to the news in my world. :)
This roller coaster of a ride is pretty amazing at times. We have a resilient little girl who is fighting so hard, it is almost as if she could never have imagined any other way to do it. She has and will have to sacrifice so many things boys/girls her age are doing right now, but the strength gathered and the perseverance she is putting forth is a lesson for her mom and I. This will provide so much confidence for us all moving forward. For now, her body is cancer free and we head into the next phase of treatment planning to keep it that way. There are two and half years to go with treatment and many difficult days ahead, but when it comes to fighting this awful disease I like my chances playing with a 0% MRD value at Day 29 compared to doing so with any micro fraction of value above that. The Leukemia, now on the outside looking in no less, may not realize it yet....but after the shock and awe of Induction, it will find out we just gettin' warmed up.
In 5 days, the next segment of treatment known as Consolidation starts and will last 8 weeks. It begins with a 12 hour long period of chemo at the hospital on Wednesday which includes another spinal cord injection under anesthesia (nothing like starting off the next phase with a bang, I guess). I'll save the details of all that is ahead in the next 9 months for a post in a couple days.....because for now, we are going to celebrate for the duration of the weekend. We are giving thanks to God and for all of the prayers sent Ellie's way. And we are resting up to re-energize for what's ahead since we know very well this all far from over. Our doctor spent some quality time with us yesterday despite being late and gave us a very good sentiment to always keep in mind. He said "Don't worry what the future holds, you will find out in due time and nobody can tell you right now what that will be. Enjoy today and enjoy tomorrow." Indeed. The War is still ongoing, but in today's battle Ellie has come out on top and reclaimed the territory that is rightfully hers. I hope you can find time to raise a glass to that this weekend. I know we will.
Coach Valvano famously spoke about the three things we as humans should do every day. He said first we should laugh. Find humor in the many things that go on during your day. Second, we should spend some time for ourselves in thought. And third, we should do or be a part of something that brings our emotions to tears. (Well, done, Done, and DONE!) Here's how he finished his thoughts:
"But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special." - Jimmy V
Amen
Friday, July 29, 2011
Thursday, July 28, 2011
No News Yet - Day 30
Yes, I know, the wait has been long for us too. :) We will for sure have the definitive results tomorrow. After labs were taken (blood sample) at 3pm today, we met with our nurse practitioner for about an hour to examine Ellie and look over paperwork for our next phase of treatment. Our doctor was a solid two hours late, so we finally met with him at about 5:30 and he told us the lab in Seattle was still working on the final tests for Ellie's Residual count determination (MRD) and that we would be delayed by another day.
The slight good news today was that the preliminary test they typically run prior to the MRD came back Negative. This test ID's what is going on with the new B-cells her body is starting to produce and how their DNA is rearranging. (Her B-cells, part of her white blood cells, are the ones that were leukemic to begin with) In a nut shell, now that most of her body is clean, she is regenerating many blood cells. Her rate of regeneration is higher than a normal child right now because her overall cell count was knocked so low from all the chemo treatment (i.e. good & bad guys both wiped out). As a result, some of the overage of new cells tend to look premature, similiar to leukemia. This is not necessarily a bad thing which is why they run this preliminary test. Many of the new cells that do not look exactly like normal white blood cells have their DNA examined to make sure they are not leukemic. Leukemia cells reproduce identically (exact same DNA configuration), so the test the lab runs checks for cell "cloning" (via PCR methodology for you molecular biologists). All of the cells able to be examined by this test in Ellie's marrow came back NEGATIVE for the cloning effect. *Small Fist Pump* This test, however, is not able to detect down to the minute detail (so to speak) of the MRD test. So, we wait.
The Doc will call tomorrow with the final results. 15 more hours won't hurt a bit. We had an awesome day going out to a restaurant for breakfast for the first time since early June. T&E, now in quite the talkative mode, were waving hi and bye to every random stranger (and garbage truck) that passed by. Ellie's blood results today showed an immune system count of 950!!! They tell us this will be her peak for a while, but man o man is it nice to see her feeling so good.
Thank you again for all of the prayers of support....Hope is alive for tomorrow!
The slight good news today was that the preliminary test they typically run prior to the MRD came back Negative. This test ID's what is going on with the new B-cells her body is starting to produce and how their DNA is rearranging. (Her B-cells, part of her white blood cells, are the ones that were leukemic to begin with) In a nut shell, now that most of her body is clean, she is regenerating many blood cells. Her rate of regeneration is higher than a normal child right now because her overall cell count was knocked so low from all the chemo treatment (i.e. good & bad guys both wiped out). As a result, some of the overage of new cells tend to look premature, similiar to leukemia. This is not necessarily a bad thing which is why they run this preliminary test. Many of the new cells that do not look exactly like normal white blood cells have their DNA examined to make sure they are not leukemic. Leukemia cells reproduce identically (exact same DNA configuration), so the test the lab runs checks for cell "cloning" (via PCR methodology for you molecular biologists). All of the cells able to be examined by this test in Ellie's marrow came back NEGATIVE for the cloning effect. *Small Fist Pump* This test, however, is not able to detect down to the minute detail (so to speak) of the MRD test. So, we wait.
The Doc will call tomorrow with the final results. 15 more hours won't hurt a bit. We had an awesome day going out to a restaurant for breakfast for the first time since early June. T&E, now in quite the talkative mode, were waving hi and bye to every random stranger (and garbage truck) that passed by. Ellie's blood results today showed an immune system count of 950!!! They tell us this will be her peak for a while, but man o man is it nice to see her feeling so good.
Thank you again for all of the prayers of support....Hope is alive for tomorrow!
Wednesday, July 27, 2011
Day 29
There was this movie I rented to watch at home one night back in the mid 1980's. Not sure why I remember this better than other long forgotten moments from over 20 years ago but it was definately very soon after my father had just acquired our first ever family VCR. To be sure, it was definately a solid 7-8 years B.R. (Before Rudy). The movie was Disney's "Tiger Town" starring Roy Scheider. Never saw it in the theatres, in fact never knew it existed in the theatres, but you knew when a movie had hit the big time in its theatre after-life because it was also available in Beta. As the story goes, a boy named Alex follows his favorite baseball team (Detroit Tigers) religiously and is particularly attached to its star slugger played by Scheider. The boy overcomes alot of adversity in his home life to maintain his attachment to Scheider's character. When Alex is at the game and Scheider is up to bat, he passionately clasps his hands together in his lap, closes his eyes tight, and "wills" Scheider to hit a home run. In true Disney fashion, he hits a home run everytime. The key was Alex had to be at the game. The final game of the season is played and Alex has a ticket but is detained by several factors (bullies being one of them). He finally arrives in the ninth running towards the front of the grandstands to see Scheider, who has struck out the whole game, hit the game winner. Gotta love Disney films sometimes. Faith through Baseball.
A person is diagnosed with a serious blood disease every four minutes in this country. In 2010 alone, approximately 43,000 people were diagnosed with Leukemia and about 260,000 currently living with it or in remission. Startling, really. Why did I never pay much attention to things like this? They have my full attention now. In 1963, a child younger than 15 years old had a 3% chance of survival. In 2011, that number is between 85-90%. The first major marker of progress is the end of Induction (first month of treatment) which is "Day 29". On that day, the expectation is the blood is free of BLASTS (leukemic cells) and the bone marrow contains below 0.01% cancer cells. If this occurs, the child is considered in Remission and the protocol for treatment, which is really just getting started, moves into the Consolidation Phase to keep the cancer from coming back. Ellie was put into the high responder category at the progress report marker of Day 8 because she had gone from 93% cancer in her marrow down to 1%. Her blood was clear of leukemia on Day 8, so our big concern is the residual count of leukemia cells in her marrow. 95% of leukemia patients achieve remission by day 29 and thus qualify for those very favorable published survival stats.
Yesterday she underwent a bone marrow aspiration to get a sample for testing as she has done twice before and get an intrathecal spinal injection of Methotrexate (chemo drug) to keep her spine the way it currently is - free of cancer cells. They call that a Lumbar Puncture (LP). It was much easier this time around for all of us. Perhaps the hardest part is that it is a very early day since we have to be over at LPCH by 7am but Ellie handled everything yesterday without as much as a single tear. It is good timing for her finding a comfort zone too because she'll be having an LP done each of the next four weeks in the next phase of treatment. We're starting to get to know all of the regular staff members in the clinic too (who now recognize Ellie) and that helps as much as anything from Polly and I's perspective. The residual test on her marrow takes about 48 hours (sent to a lab in Seattle) so we have a meeting this Thursday afternoon with our doctor to go over the results. I'll post the results here when we know them.
Today has been awesome. Nice 80° day here in the Bay. Polly and I are home with the kids and able to do most things normally. You know when Ellie is feeling good because she carefully answers questions by preficing them with "Umm-Min-Nah". So, in responding to what color something is, she jubilantly exclaims "Umm-Min-Nah-YELLOW!" She is happier now than even the entire month of June, I think. Polly has become very good at giving Ellie her last few days of hour long IV pushes of antibitoics through her PICC line which are given every 6 hours (inlcuding throughout the night). We'll be done with those this afternoon thankfully. Her platelet count is now back to normal which puts some worry to bed of her falling down and cutting herself (platelets are what make your blood clot).
We'll deal with the results tomorrow the best way we can in any regard. We're not shy on strength right now after the week we've had, but we are still humbled by the fact that we don't have the ultimate control here. For now though, Hope is in charge, on our side, and in full swing. From my vantage point at home, I am sitting inches from the sideline with my hands clasped tightly in my lap and my eyes are closed. I believe in my Daughter - let's do this.
A person is diagnosed with a serious blood disease every four minutes in this country. In 2010 alone, approximately 43,000 people were diagnosed with Leukemia and about 260,000 currently living with it or in remission. Startling, really. Why did I never pay much attention to things like this? They have my full attention now. In 1963, a child younger than 15 years old had a 3% chance of survival. In 2011, that number is between 85-90%. The first major marker of progress is the end of Induction (first month of treatment) which is "Day 29". On that day, the expectation is the blood is free of BLASTS (leukemic cells) and the bone marrow contains below 0.01% cancer cells. If this occurs, the child is considered in Remission and the protocol for treatment, which is really just getting started, moves into the Consolidation Phase to keep the cancer from coming back. Ellie was put into the high responder category at the progress report marker of Day 8 because she had gone from 93% cancer in her marrow down to 1%. Her blood was clear of leukemia on Day 8, so our big concern is the residual count of leukemia cells in her marrow. 95% of leukemia patients achieve remission by day 29 and thus qualify for those very favorable published survival stats.
Yesterday she underwent a bone marrow aspiration to get a sample for testing as she has done twice before and get an intrathecal spinal injection of Methotrexate (chemo drug) to keep her spine the way it currently is - free of cancer cells. They call that a Lumbar Puncture (LP). It was much easier this time around for all of us. Perhaps the hardest part is that it is a very early day since we have to be over at LPCH by 7am but Ellie handled everything yesterday without as much as a single tear. It is good timing for her finding a comfort zone too because she'll be having an LP done each of the next four weeks in the next phase of treatment. We're starting to get to know all of the regular staff members in the clinic too (who now recognize Ellie) and that helps as much as anything from Polly and I's perspective. The residual test on her marrow takes about 48 hours (sent to a lab in Seattle) so we have a meeting this Thursday afternoon with our doctor to go over the results. I'll post the results here when we know them.
Today has been awesome. Nice 80° day here in the Bay. Polly and I are home with the kids and able to do most things normally. You know when Ellie is feeling good because she carefully answers questions by preficing them with "Umm-Min-Nah". So, in responding to what color something is, she jubilantly exclaims "Umm-Min-Nah-YELLOW!" She is happier now than even the entire month of June, I think. Polly has become very good at giving Ellie her last few days of hour long IV pushes of antibitoics through her PICC line which are given every 6 hours (inlcuding throughout the night). We'll be done with those this afternoon thankfully. Her platelet count is now back to normal which puts some worry to bed of her falling down and cutting herself (platelets are what make your blood clot).
We'll deal with the results tomorrow the best way we can in any regard. We're not shy on strength right now after the week we've had, but we are still humbled by the fact that we don't have the ultimate control here. For now though, Hope is in charge, on our side, and in full swing. From my vantage point at home, I am sitting inches from the sideline with my hands clasped tightly in my lap and my eyes are closed. I believe in my Daughter - let's do this.
Monday, July 25, 2011
Bone Marrow Test Tomorrow
Just wanted to let everyone know, that the hospital called us tonight and due to a scheduling conflict, Ellie's day 29 bone marrow got moved up to tomorrow (Tuesday) morning. This is a big day for all of us and we appreciate all of your continued prayers for Ellie.
Sunday, July 24, 2011
Family - Day 26
I remember lying on the floor at 2am(ish) when T&E were about 1 month old. Ellie kinda fell into this nice pattern where if we put her in the swing and got it moving at a good pace, she'd sleep for a solid 3-4 hours at a time. Timmy, not so much. With the Bassinets deemed near useless after the first few days at home, we were willing to try any logical place to get them to sleep. Timmy finally settled into a nice rhythm falling asleep in a baby bouncy chair that vibrated, all be it with work involved. The problem was, getting into that "deep" sleep realm that those books talk about took some effort. He would start to nod off, swaddled up like a baby burrito no less, and give the (false) hope that dad could also now go sleep....but then wake up to the smallest of noises. Unless he was being bounced, he would not go back to sleep. So, on many a night I lay there with my trusty air mattress on the floor, because I was too tired to sit up, with my arm above my head bouncing him ever so slightly until it was quiet long enough for me to finally savor my own slumber.
The concentrated time you spend in those first three months of learning parenting 101 (by fire for us with twins) is pretty incredible. Not that I didn't leave many of my self serving desires of my late teens/early 20's behind several years ago, but a resounding theme in my head as I would drift off to sleep on those nights on the floor was simply, "This is SO not about me anymore". Parenting brings FAMILY to a whole new level. It is the ultimate multi-faceted perspective on how life should be lived with an endless, tireless, and supremely loving support system. It is also the cross over from nurturee to nurturer. Polly and I have derived the strength we have had to face this adversity because of the families we come from. We can exhaust ourselves daily with the various appointments, medications, doctor talks, nurse needs, transportation to and fro, and endless supportive needs of T&E for all of these things going on BECAUSE....we were reminded daily growing up and even more so now who has our backs.
We have had a good week. There is no doubt about it. Ellie is laughing, playing, and scooting around LPCH like she knows everyone and wants to share that she is feeling better. We are going to guard our optimism for just a few more days. On Wednesday, she will reach a turning point for therapy at Day 29. Hard to believe in some respects because it does seem like this has been an amazingly fast process thus far. The science doesn't lie though. Despite having a good 2+ years of treatment to go, with some hard times ahead with side effects I might add in the next 9 months, the prognosis statistics all encompass Day 29 as the first major mileage marker. I'll save the intricacies of that for another post on Tuesday or Wednesday. We will have results of Day 29 by Friday of this week. Summer school is now over for me which eases our schedule a bit though wouldn't you know it, I have jury duty tomorrow. You better believe the cancer card is coming out of the pocket.
She is still in the hospital tonight as her immune system blood counts have not come above the 500 mark yet. We were given a little hope for discharge on Friday when she had risen to 350 (highest since before chemo began) but they dipped a bit today (Sunday) likely as a result of the chemo from last Wednesday and that her body may still have some traces of the bug that put her in here originally about 10 days ago. Our new hope for release is this coming Tuesday, just in time to return Wednesday for her half day bone marrow aspiration procedure. During that procedure, they will do one more injection of Methotrexate into her spine to further fortify a clear spinal column and then she will be off of chemo for over a week allowing her blood counts to rise significantly. Her hair has started slowly to fall out, but at the beautiful age of two her reaction is similar to my thoughts on people who wear sunglasses at night - Dude, it just doesn't matter. Besides, hats with flowers have all ready been deemed by Ellie to be the coolest thing since learning how to "Cuggy" (color). So there.
I relieved Polly tonight for a few hours so she could go out, spend some quality time with Timmy, and do some errands. Her travels not too far away from the hospital had her cross paths with another dad who turns out is staying just a few doors down in the same wing right now with his son, Benjamin. She told me he recognized her and they exchanged a few words. He explained, his son had ALL leukemia at age 2, was in remission for 9 years and now at age 11 has relapsed with the leukemia now turning into the much less desirable AML form. He just completed a bone marrow transplant 12 days ago and is now in a wait and see mode for a potential second remission. Polly told me she could tell he was very hesitant to mention the whole story after first finding out that we are only 26 days into the process with the exact same thing. So, after he tells his story what does he do instead of looking for sympathy for his own situation? He immediately lets Polly know how good he feels about Ellie (after knowing her for a only few minutes) because 9 years later, the therapy and medications are vastly improved, we are at a superior place in LPCH (he was not back then), and we have many many more statistical reasons to count on than they did back in 2002. Wow. From his own prolonged struggle, he found words in a moment's notice to comfort us. I hope you will join me tonight in saying a prayer for Benjamin, who in my estimation is as good as family now. It is the least I can do.
My extended family gathered this weekend for my cousin's wedding in Berkeley. With an incredible show of unwavering support, all of them donned and thus created a wonderful sea of small orange ribbons to honor Ellie's fight while we celebrated a much happier occasion. Also told to me during the reception were a couple of prayerful actions taken back home by several of them on Ellie's behalf which I will not soon forget. Family is what we always return to at the end of the day and it is the lifeblood of who I am as a person. There is no cost or resource I will spare to make sure my kids have the same support growing up, regardless of the self sacrifice, if it means they are afforded the same opportunities as I have been so fortunate to have. It is again....the least I can do.
**UPDATE** We had a surge in blood counts overnight and Ellie eclipsed the mark she needed in her immune system to be discharged. So as of Monday afternoon, we are all finally at home!
The concentrated time you spend in those first three months of learning parenting 101 (by fire for us with twins) is pretty incredible. Not that I didn't leave many of my self serving desires of my late teens/early 20's behind several years ago, but a resounding theme in my head as I would drift off to sleep on those nights on the floor was simply, "This is SO not about me anymore". Parenting brings FAMILY to a whole new level. It is the ultimate multi-faceted perspective on how life should be lived with an endless, tireless, and supremely loving support system. It is also the cross over from nurturee to nurturer. Polly and I have derived the strength we have had to face this adversity because of the families we come from. We can exhaust ourselves daily with the various appointments, medications, doctor talks, nurse needs, transportation to and fro, and endless supportive needs of T&E for all of these things going on BECAUSE....we were reminded daily growing up and even more so now who has our backs.
We have had a good week. There is no doubt about it. Ellie is laughing, playing, and scooting around LPCH like she knows everyone and wants to share that she is feeling better. We are going to guard our optimism for just a few more days. On Wednesday, she will reach a turning point for therapy at Day 29. Hard to believe in some respects because it does seem like this has been an amazingly fast process thus far. The science doesn't lie though. Despite having a good 2+ years of treatment to go, with some hard times ahead with side effects I might add in the next 9 months, the prognosis statistics all encompass Day 29 as the first major mileage marker. I'll save the intricacies of that for another post on Tuesday or Wednesday. We will have results of Day 29 by Friday of this week. Summer school is now over for me which eases our schedule a bit though wouldn't you know it, I have jury duty tomorrow. You better believe the cancer card is coming out of the pocket.
She is still in the hospital tonight as her immune system blood counts have not come above the 500 mark yet. We were given a little hope for discharge on Friday when she had risen to 350 (highest since before chemo began) but they dipped a bit today (Sunday) likely as a result of the chemo from last Wednesday and that her body may still have some traces of the bug that put her in here originally about 10 days ago. Our new hope for release is this coming Tuesday, just in time to return Wednesday for her half day bone marrow aspiration procedure. During that procedure, they will do one more injection of Methotrexate into her spine to further fortify a clear spinal column and then she will be off of chemo for over a week allowing her blood counts to rise significantly. Her hair has started slowly to fall out, but at the beautiful age of two her reaction is similar to my thoughts on people who wear sunglasses at night - Dude, it just doesn't matter. Besides, hats with flowers have all ready been deemed by Ellie to be the coolest thing since learning how to "Cuggy" (color). So there.
I relieved Polly tonight for a few hours so she could go out, spend some quality time with Timmy, and do some errands. Her travels not too far away from the hospital had her cross paths with another dad who turns out is staying just a few doors down in the same wing right now with his son, Benjamin. She told me he recognized her and they exchanged a few words. He explained, his son had ALL leukemia at age 2, was in remission for 9 years and now at age 11 has relapsed with the leukemia now turning into the much less desirable AML form. He just completed a bone marrow transplant 12 days ago and is now in a wait and see mode for a potential second remission. Polly told me she could tell he was very hesitant to mention the whole story after first finding out that we are only 26 days into the process with the exact same thing. So, after he tells his story what does he do instead of looking for sympathy for his own situation? He immediately lets Polly know how good he feels about Ellie (after knowing her for a only few minutes) because 9 years later, the therapy and medications are vastly improved, we are at a superior place in LPCH (he was not back then), and we have many many more statistical reasons to count on than they did back in 2002. Wow. From his own prolonged struggle, he found words in a moment's notice to comfort us. I hope you will join me tonight in saying a prayer for Benjamin, who in my estimation is as good as family now. It is the least I can do.
My extended family gathered this weekend for my cousin's wedding in Berkeley. With an incredible show of unwavering support, all of them donned and thus created a wonderful sea of small orange ribbons to honor Ellie's fight while we celebrated a much happier occasion. Also told to me during the reception were a couple of prayerful actions taken back home by several of them on Ellie's behalf which I will not soon forget. Family is what we always return to at the end of the day and it is the lifeblood of who I am as a person. There is no cost or resource I will spare to make sure my kids have the same support growing up, regardless of the self sacrifice, if it means they are afforded the same opportunities as I have been so fortunate to have. It is again....the least I can do.
**UPDATE** We had a surge in blood counts overnight and Ellie eclipsed the mark she needed in her immune system to be discharged. So as of Monday afternoon, we are all finally at home!
Wednesday, July 20, 2011
Best Day Yet - Day 22
Hi – It’s Polly here for my first post. I’m not the writer that Jeff is, but we had a really good day and I wanted to share.
Today was Ellie’s best day since being diagnosed. It started off with an early morning visit from a good friend who brought Ellie some new horsey jammies, and me an early morning latte. For those of you who don’t know, Ellie loves horsey things (what a surprise) so the new jammies were a huge hit and she was very excited to try them on tonight before bed.
Timmy and our babysitter showed up at 10 and we all went up to the preschool playroom that is open for an hour every Tuesday and Thursday. Today was the first time Timmy and Ellie played together like they did before she was sick. We did some art projects, played with some dried rice that you scoop and pour and best of all got to play with a pretend kitchen and food, which is one of their favorite things to do at home. The hour ended with a special musical guest and songs, and both Timmy and Ellie took turns playing with the small guitar, which I think was the highlight for them. Seeing them happily play together, just like old times, was a moment I will cherish for a long time.
Following lunch, a nap, and a few IV meds she was unhooked again and Timmy and Jeff showed up. We went outside to the courtyard and let them climb the benches. Jeff carried Ellie around on his shoulders, while I carried Timmy on mine. For a few minutes, if you could forget the setting we were in it almost seemed like we were all back to life before leukemia. She now smiles at every single person we see, nurses, doctors, other patients, and complete strangers. She has become such a good patient and this morning helped the doctor move the stethoscope to the correct spots on her chest.
She received her chemo this evening, so we know to expect the next several days to be not as good for her. But, seeing her today playing with Timmy was a wonderful thing and gives us hope that we have many more of those days to come in the future. Thank you to everyone for all of your continued prayers, love and support. We couldn’t be making it through this without all of our family and friends.
Monday, July 18, 2011
Much Better - Day 20
Today was a good day. Ellie's infection on her leg was 10 times better than yesterday and she was back to walking around without much difficulty (or at least back to the slight waddle). The experience of seeing her loopy on a wee bit of morphine has actually been quite amusing. We've enjoyed the laughter. Who needs expensive toys and electronic devices when a dancing blanket and a flying "other bubah" send one into stitches?! (Please do not try this at home - Ellie is a trained medication taker professional) She is definitely feeling better. We are seeing this trend that as you get farther away from a Chemo day, her energy returns like a light switch has been turned on. Her blood counts were about the same today, but of particular note is that her body is beginning to make healthy white blood cells in significant amounts. The chemo this Wednesday will knock them out, but the potential is there and that's a very good sign.
Timmy, who now is into anything and everything he can get his busy little hands on, enjoys now picking up the phone and talking to mommy whenever possible. He practices as much as he can, especially when dad has his back turned and he can quickly swipe the phone to yell a quick "HALLOOOOW". All this before realizing I am watching him to which he immediately sends me a sneaky grin and then turning to sprint away. He wakes up every morning peering over into Ellie's crib to see if she is back. He keeps saying "Ellie Home" and I have to give a small explanation in 2 yr old speak. However, he then gets very excited to hear that he is going to visit later later in the day. Once at the hospital, he typically greets her with a kiss on the cheek and then proceeds to gather all of the toys she has in the hospital room for himself.
If there is one thing we have been absolutely blessed with in abundance these last two weeks - it is good food. Thankyou very much to everyone who has so generously brought dinner. I have four days left of summer school to teach and then will have a good 4 weeks off to help ease our daily schedule a bit and definitely make this hospital stay go a little quicker.
Hooray for good days....makes watching the chemo drug battle with cancer from the sidelines a lot more tolerable.
Sunday, July 17, 2011
Hospital Stay Extended - Day 19
Our weekend has been up and down to say the least. The hospital stay that we had hoped to be only a few days is looking like it will be about two weeks now. Ellie's fever persisted through yesterday but was back to normal as of this morning. Her blood counts have shown a Neutrophil level of 100 consistently since we got to LPCH on Friday morning, again way below the required 500 for discharge. As a complication, her bad diaper rash, which can be attributed to the combo of chemo drugs that stop her up and side effect meds that aim to reverse that, has helped a Cellulitis infection to take hold of a portion of her right leg. She has begun antibiotics for that which are different than the antibiotics she is taking for the bug that caused the fever. The side effect of the Cellulitis is that her leg is very painful now and her ability to walk at all has been impaired significantly. They have given her a very small amount of morphine to make her more comfortable.
All that being said, her age and innocent view on the world right now keeps it from getting her down. She received a quarter of a liter of blood on Saturday which we are finding out is a huge energy boost for a good 48 hours. With the exception of a few hours today when her leg was really hurting her, she has been laughing a good amount and playing with all of the toys the hospital drops off at the room. Her appetite seems to be decreasing a little now since we are four days clear of the steroids. Ellie's resiliency is amazing to me. She now communicates almost instantaneously when her diaper needs to be changed which helps keep the rash down and hopefully let her poor skin heal up. She also doesn't see the sense in going stir crazy in the hospital room like her father, so I am thankful.
The next big chemo treatment day is Wednesday and like I mentioned before, if her immune system does recover a small amount to possibly near the 500 mark, it will be shot down again by the Danorubicin. We are in a wait and see mode with this Cellulitis. If it clears in 48 hours when the antibiotics are supposed to be in full affect, we will feel much better. If that does not happen, more tests will be needed....possibly an MRI on her lower body. We are praying this isn't necessary because the amount of things we are putting into her little body right now is very overwhelming. I know this is the exact place she needs to be right now....but I am not a fan of the extended hospital stays.
We continue to look with hope towards our benchmark coming up now in less than two weeks - the Day 29 bone marrow aspiration. A clean result will signal the end of this intensive Induction phase. We hope to meet our long term oncology doctor tomorrow for the first time as he returns from his three week vacation finally. The one major issue we have had thus far with LPCH is that the consistency of which doctors we've seen over the past 3+ weeks has been anything but consistent. I know everyone is relatively on the same page with this universal protocol, but it would be nice to have a familiar face most days so not to feel like we're being passed around to every staff doctor while being fit in to their busy day. Ellie deserves that.
I need this prayer tonight, so I can have a fresh start tomorrow:
All that being said, her age and innocent view on the world right now keeps it from getting her down. She received a quarter of a liter of blood on Saturday which we are finding out is a huge energy boost for a good 48 hours. With the exception of a few hours today when her leg was really hurting her, she has been laughing a good amount and playing with all of the toys the hospital drops off at the room. Her appetite seems to be decreasing a little now since we are four days clear of the steroids. Ellie's resiliency is amazing to me. She now communicates almost instantaneously when her diaper needs to be changed which helps keep the rash down and hopefully let her poor skin heal up. She also doesn't see the sense in going stir crazy in the hospital room like her father, so I am thankful.
The next big chemo treatment day is Wednesday and like I mentioned before, if her immune system does recover a small amount to possibly near the 500 mark, it will be shot down again by the Danorubicin. We are in a wait and see mode with this Cellulitis. If it clears in 48 hours when the antibiotics are supposed to be in full affect, we will feel much better. If that does not happen, more tests will be needed....possibly an MRI on her lower body. We are praying this isn't necessary because the amount of things we are putting into her little body right now is very overwhelming. I know this is the exact place she needs to be right now....but I am not a fan of the extended hospital stays.
We continue to look with hope towards our benchmark coming up now in less than two weeks - the Day 29 bone marrow aspiration. A clean result will signal the end of this intensive Induction phase. We hope to meet our long term oncology doctor tomorrow for the first time as he returns from his three week vacation finally. The one major issue we have had thus far with LPCH is that the consistency of which doctors we've seen over the past 3+ weeks has been anything but consistent. I know everyone is relatively on the same page with this universal protocol, but it would be nice to have a familiar face most days so not to feel like we're being passed around to every staff doctor while being fit in to their busy day. Ellie deserves that.
I need this prayer tonight, so I can have a fresh start tomorrow:
The Serenity Prayer
God grant me the serenity
to accept the things I cannot change;
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world as it is, not as I would have it;
Trusting that He will make all things right if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him Forever in the next.
Amen.
Friday, July 15, 2011
Back in the Hospital - Day 17
"The best way out of difficulty is through it" - Will Rogers
You could say we were semi-prepared for this. When we were discharged two weeks ago from LPCH, we were reminded from three different nurses and doctors that Ellie's immune system would have a hard time fighting any sort of bug. And last night, at about 4am, El had her first fever of 100.5°. Anything above 100.3° is an automatic trip to the ER, so off we went. Ellie's Neutrophil cell count needs to be above 500 for her immune system to be able to fight disease; but as a casualty of the chemo drug vs cancer battle, it has been hovering around 200. We are told most of the bugs she is susceptible of catching are actually coming from her own body, assuming we're not parading her around say the Costco crowd on a cold Saturday with no jacket on (believe me, most days you cannot pay me to go to Costco anyways, so trust we know what we're doing with this particular parameter). A normal child's Neutrophil count is about 2K and above, so we're a ways away. This will be something we're battling for a good portion of the next year and all ready I can forecast frustrations with being stuck in the hospital. Protocol for discharge is 48 hours fever free and a Neutrophil count of 500 or above. With chemo coming again on Wednesday and El's current Neutrophil count at 100, we are very unfortunately looking at spending the entire week here at LPCH.
Polly bought us this great new travel bag for clinic days (and in-patient stays it seems). It is the modern day travel package 8th wonder of the world. I am pretty sure it transforms into a robot, but still too soon to tell. The bag has several pockets, can hold a good days worth of food for El plus important documents, medications, diapers, Chemo Duck (yes he now goes everywhere with us), and the "Pay-Pay" (That's the IPAD - can never be too far away from Super Grover youtube videos). It is basically a house in a bag and all we had to do last night was grab it and go - we're learning.
I wish we could say we are at ease with the bumps we've been told to expect but several things still raise the blood pressure a bit (ok, alot). We are still coming up to speed on all the quirks that may occur with various tests and whats considered routine for a patient on chemo. The hospital world seems filled with many many people that put on smiling faces and try to make you comfortable but it is always my instinct to want to know if anything major has popped up after routine tests comeback in today's nurses' words "a little funny". Call it a reoccurring bad dream from that awful doctor call on Hwy 101 on June 26th. Ellie's Potassium test came back today sky high in a range where it sounded like if it were a true value people were going to start being paged.....and people were going to start being paged NOW. (This is one time where my Chemistry degree was not beneficial to my emotional state of mind) So, they decided to redo the test a second and then a third time to replicate the result. About 2 hours had gone by at this point and finally we got word the third test (done in the other PICC line from the first two) was normal and thus the first two tests must have been sampling or lab errors. The resident doc calmly comes back and says "its been known to happen". DOES IT NOW?! (big exhale) I know we'll get better at knowing what is appropriate to react to and what's not worth it with these seemingly infinite lab tests, but being a cancer treatment world newbie is very difficult. Thank god for lab errors.
Last night was a little surreal. Polly had just been up to change her diaper at about 3am. About 40 min later, we both awoke to this annoying toy making sound in our baby monitor. Its this toy car that has a button on top that when pushed plays bad early 90's Technotronic music and doesn't shut off for a good 5 excruciatingly looooong minutes. I wish I remembered who gave it to us because I will gladly repay the favor for their next child and send over a Tickle Me 'Slipknot' doll. Turns out the car was just outside the kids door in the backyard within reach of my hand if I could quietly open the sliding glass door. So, I decided to be stealth, crawl on the ground in the kids room, open the door, and get the toy car. My master plan was working until I closed the door to the backyard and turned to crawl out of the room when Technotronic decided to play an encore performance. That was it, El was up. We let her come into our room since it was nearly 4am and we knew the food cries for 5am yogurt would start soon. I set Ellie with Polly and went upstairs to dismember the car thus ensuring it could not make a harmful sound again. Once that was complete, I got back into bed and felt Ellie's forehead like I do most nights as a check, got back up to get the thermometer, and here we are now looking at a week of LPCH residency. Two questions come to mind - How did the toy get turned on from outside originally and how bad would her fever have been if we hadn't noticed it until 2-3 hrs later when we got up? I cannot believe I am saying this - and you cannot tell ANYBODY - thankyou, Technotronic.
BTW, Polly would welcome visitors this week if you are wanting to drop by. You need only be healthy to do so. The company helps pass the time, since as I mentioned one can only handle so many Super Grover videos (he really leaves a lot to be desired as far as super heroes go).
Being in the hospital is reassuring in the sense that we know she is being monitored 24 hours a day. This state of being neutropenic (neutrophils < 500) is going to test our resolve down the road, I can tell. So we have to go through it. The environment is still very scary. A month ago we were laughing and playing in the waves with both kids while camping in Carpenteria....and now we're agonizing over potassium test mishaps and cancelling most plans for the next few months. We just don't want anymore surprises. Ellie is being very brave despite her steroid puffed appearance and trouble now walking because of joint pain (common side effect). I really could not think of anything or anyone I have ever been prouder of. She not only smiled at me when I was leaving tonight to go home but also gave me two high fives. We know this is difficult right now, but looks like she is taking the lead....to get us all through it.
Tuesday, July 12, 2011
Day to Day - Day 14
A routine feels good. I think it goes beyond just saying we are creatures of habit; it has more to do with the desire to feel comfortable with things that are familiar and those which we love to do. A routine settles nerves and gives us a little more peace of mind (you hope) of what we can expect a bit down the road. The challenge, of course, is being able to meet the major moments of adversity and find our way back to a routine that helps us move forward....with proper perspective.
There just isn't time most days right now to be tired and it is remarkable how your body adjusts for the sake of your child. In the past few days, Ellie has reverted back to a pattern of sleep that is reminiscent of those first three months of the twins lives. You know those nights where one kid wakes at midnight screaming which then cues the sleeping twin next to him/her to leap by two feet off their own mattress into the air and immediately contend for the right of who can scream louder. After about 20 minutes of changing diapers and a few soothing words (all be it slightly incomprehensible sentences I've realized when I am half asleep), they both fall back to sleep only to repeat this glorious ritual twice more before the sun comes up. Ellie's digestive system is all stopped up from a mixture of the only foods she'll agree to eat and the two chemo drugs she gets on Wednesdays. Her pain is very apparent and about the only thing we can do apart from apply meds to couter act the predicament is to change her as often as we can. Throw in our damn friend Dexamethasone (the steroid - AKA the annoying friend you are obligated to invite to the party), which is Ellie's currently ingested item that can be summed up as "the cause of and solution to all of life's problems", and we have a very unhappy child that is going through hell right now. Are we tired? Of course. But its the new routine that moves us one step closer to a cure.
I have to add on a much lighter note that there are moments in the madness late at night that bring a wonderful sense of what life is all about. For instance, when Timmy wakes due to Ellie's unhappiness and I come in to tend to him while Polly is with Ellie. I ask him to help me look for his paci in his bed (which he pretends to do but never finds anything) and then responds immediately to my request to lay down and try to go back to sleep knowing we need to be with Ellie right now. Moments later, he is snoring face down on his knees with his butt in the air. Also recently, Chole (our dog) sneezed nearby and we hear Timmy blurt out "Bless YOU CHLOE!" (when did he learn to say "bless you"???? when did he start using a third word in a sentence????) With all the worry and fatigue that goes along with this ordeal, moments like that are priceless and bring a much needed smile.
Other daily duties - We have to flush her PICC line twice a day with Heparin to prevent any clots, change the input caps twice a week and keep the line as sterile as we can for chemo days. The PICC line, by the way, has two inputs that come out her upper right arm and are attached to a major vein near her heart on the other end. It's like a much more effective (and comfortable) I.V. for her. She has taken charge of the situation when we do the flushing and been known to tell Timmy to stay away and reminds Polly or I not to forget the "other line" when cleaning. Incidently, The word "other" seems to play an interesting role right now. In her crib, she sleeps with two stuffed bunnies so aptly named - "Bubah" and "Other Bubah". Well, what else would you name them?!
She has gotten very good at verbalizing what food she wants which is a welcome relief to the communication barrier that comes with infants and young toddlers who do desprately want to tell you what they are thinking. So, at 5am now when she may spend the final hour sleeping with us in bed, we are awakened by the familiar directive of "Baby YOGURT!" to send us on our way to get this day started. Trial by fire has taught me to bring several yogurts at a time. 2 year old steroid fueled hunger is not to be questioned NOR messed with. Her active and ever expanding vocabulary gives us quality direction, provides insight into the routine that works for her in this moment, and thus provides us with a small sense of comfort to help her fight.
Tomorrow is another major chemo day at the clinic. She gets two more heavy doses of the Vincristine and Danorubicin but also gets to stop the steroid, so we hope some of these awful side effects will subside by the weekend. I did get a smile today when she was laying on the couch before I left for work....a great reminder that our El-Belle is still in there alive and well. Let's pray all goes smoothly.
Once a year, I go up to St Anthony's in the SF tenderloin to chaperone a class of students who spend the day working at the foundation feeding and helping the most densely populated poverty stricken area of the Bay Area. Between the morning service hours and lunch in the main dining hall with the homeless folks, we get a chance to sit in the very serene St Boniface chapel for a little while. This past spring when I went, I sat down in one of the front pews next to three folks who were doing their daily Rosary devotions. I admired their devout responsibility to the repetition of prayers despite the very obvious hardships they faced outside those walls. The intent with their voices and the concentrated effort on their faces showed a tremendous commitment to their routine of faith. Much like the daily routine that is evolving in front of us right now that brings comfort in little parts to Ellie during a troubling day and ultimately helps us move forward to where we want to go.
There just isn't time most days right now to be tired and it is remarkable how your body adjusts for the sake of your child. In the past few days, Ellie has reverted back to a pattern of sleep that is reminiscent of those first three months of the twins lives. You know those nights where one kid wakes at midnight screaming which then cues the sleeping twin next to him/her to leap by two feet off their own mattress into the air and immediately contend for the right of who can scream louder. After about 20 minutes of changing diapers and a few soothing words (all be it slightly incomprehensible sentences I've realized when I am half asleep), they both fall back to sleep only to repeat this glorious ritual twice more before the sun comes up. Ellie's digestive system is all stopped up from a mixture of the only foods she'll agree to eat and the two chemo drugs she gets on Wednesdays. Her pain is very apparent and about the only thing we can do apart from apply meds to couter act the predicament is to change her as often as we can. Throw in our damn friend Dexamethasone (the steroid - AKA the annoying friend you are obligated to invite to the party), which is Ellie's currently ingested item that can be summed up as "the cause of and solution to all of life's problems", and we have a very unhappy child that is going through hell right now. Are we tired? Of course. But its the new routine that moves us one step closer to a cure.
I have to add on a much lighter note that there are moments in the madness late at night that bring a wonderful sense of what life is all about. For instance, when Timmy wakes due to Ellie's unhappiness and I come in to tend to him while Polly is with Ellie. I ask him to help me look for his paci in his bed (which he pretends to do but never finds anything) and then responds immediately to my request to lay down and try to go back to sleep knowing we need to be with Ellie right now. Moments later, he is snoring face down on his knees with his butt in the air. Also recently, Chole (our dog) sneezed nearby and we hear Timmy blurt out "Bless YOU CHLOE!" (when did he learn to say "bless you"???? when did he start using a third word in a sentence????) With all the worry and fatigue that goes along with this ordeal, moments like that are priceless and bring a much needed smile.
Other daily duties - We have to flush her PICC line twice a day with Heparin to prevent any clots, change the input caps twice a week and keep the line as sterile as we can for chemo days. The PICC line, by the way, has two inputs that come out her upper right arm and are attached to a major vein near her heart on the other end. It's like a much more effective (and comfortable) I.V. for her. She has taken charge of the situation when we do the flushing and been known to tell Timmy to stay away and reminds Polly or I not to forget the "other line" when cleaning. Incidently, The word "other" seems to play an interesting role right now. In her crib, she sleeps with two stuffed bunnies so aptly named - "Bubah" and "Other Bubah". Well, what else would you name them?!
She has gotten very good at verbalizing what food she wants which is a welcome relief to the communication barrier that comes with infants and young toddlers who do desprately want to tell you what they are thinking. So, at 5am now when she may spend the final hour sleeping with us in bed, we are awakened by the familiar directive of "Baby YOGURT!" to send us on our way to get this day started. Trial by fire has taught me to bring several yogurts at a time. 2 year old steroid fueled hunger is not to be questioned NOR messed with. Her active and ever expanding vocabulary gives us quality direction, provides insight into the routine that works for her in this moment, and thus provides us with a small sense of comfort to help her fight.
Tomorrow is another major chemo day at the clinic. She gets two more heavy doses of the Vincristine and Danorubicin but also gets to stop the steroid, so we hope some of these awful side effects will subside by the weekend. I did get a smile today when she was laying on the couch before I left for work....a great reminder that our El-Belle is still in there alive and well. Let's pray all goes smoothly.
Once a year, I go up to St Anthony's in the SF tenderloin to chaperone a class of students who spend the day working at the foundation feeding and helping the most densely populated poverty stricken area of the Bay Area. Between the morning service hours and lunch in the main dining hall with the homeless folks, we get a chance to sit in the very serene St Boniface chapel for a little while. This past spring when I went, I sat down in one of the front pews next to three folks who were doing their daily Rosary devotions. I admired their devout responsibility to the repetition of prayers despite the very obvious hardships they faced outside those walls. The intent with their voices and the concentrated effort on their faces showed a tremendous commitment to their routine of faith. Much like the daily routine that is evolving in front of us right now that brings comfort in little parts to Ellie during a troubling day and ultimately helps us move forward to where we want to go.
Saturday, July 9, 2011
The Equalizer - Day 10
I hate giving up the early goal. Anything scored on a team of mine less than 10 minutes in is like a sucker punch. You spend so much time planning and training to meet goals on the horizon with hopes that you are as prepared as you will ever be to come out the victor. And within the span of a few minutes everything about the game changes, tactically and perhaps more importantly - mentally. As a coach, once the game begins, there is nothing much to do but sit back and watch it unfold nervously on the sideline. You try not to lament what might have been but hope to see a little poise under pressure from the team so to climb its way back. Then, a little magic happens after you may have questioned if it were even possible. Your team shows its true colors, pulls one back, and scores the equalizer.
You are going to get a science lesson tonight - After Wednesday's long session at LPCH, where a sample of Ellie's bone marrow was taken for the Day 8 data point, we were told to come back on Friday for end of the week labs (blood work) and they would discuss the results of the bone marrow analysis. Up through last weekend, I had been mentioning to you about the happy decline of her leukemia driven white blood cell (WBC) count. As the chemo drugs began their campaign in the very early stages, a dramatic lowering of the WBC's shows that there has been progress in her body with all mature blood cells. As we are finding out, getting rid of the bad guys already in the blood, thanks to the forumlation technology of today's cancer treatment world, is relatively predictable. The real key is to get after the source of where they are born, so to speak, and formed in their premature state - her bone marrow. We've hit her bottom point in terms of WBC count, so the focus shifts to how many of the bad guys can still be seen in her marrow. Her body has started to regenerate healthy WBC's and thus her counts from here on out will fluctuate a bit but are not expected to go below 1000 anymore. Back to her marrow - on the day of her diagnosis it was estimated to have been filled with 93% Leukemia cells. Why do I tell you all of this? Well, because on Friday the Day 8 marrow results given to us showed that her marrow now contains only 1% leukemia. YEEEEAAAAHHHHHH! In fact, the docs say the visual observation of her marrow which so clearly showed the cancer two weeks ago can no longer see a single cell with the naked eye. The 1% can only be detected through the minimal residual disease (MRD) testing they do under the microscope. Translation - Ellie has Equalized. (That's my girl!!!!)
Polly and I were very happy but we continue to hear what the docs are telling us and guard our excitement for now. The Day 8 data point is only a progress report, and we're still very early in this game. The docs did make sure to reiterate though that she is responding very well to the treatment and that gives the medical team alot of confidence. In turn, it fuels our family fire as well to keep at this with a fever pitch. They will not do another bone marrow check now until the goal date set all along for this first phase - Day 29 (which should be roughly July 27th with results coming back on July 29th).
Unfortunately, the 10 days that have gone by have taken their toll. She is very tired most of the day and rarely smiles much. As expected, her incredible hunger has reached a new level. We are in the pattern right now of eat then sleep pretty much all day with a few times up in the middle of every night. One of the hardest things is that she is still not old enough to verbally tell us in full sentecnes what is hurting her or what she may want at a given time. Polly has been amazing at being able to read her and make adjustments with the side effect meds, but it is always a work in progress. We are both hoping that when her steroid allotment for this phase ends on Wednesday, we might have a happier Ellie on our hands. We try as best we can to make her comfortable and give her the love she needs to keep fighting. Both sets of T&E's grandparents have been here this week and weekend to show them some love and provide immeasurable support for all of us. (Thanks, Mom & Dad)
The continued outpouring of support we receive daily from people in all walks of our lives is so wonderful. It helps us get going during a few bleary eyed mornings and helps sustain us during long days at the hospital. Ellie's strength is one of the most inspriational things we have ever seen. She has fought back from the very beginning....deliberately, effectively, and gracefully.
After a sucker punch at the beginning of a game she never wanted any part of, I'd say she has pulled even....and done so with all the time in the world left to go. GAME ON, cancer, GAME ON!
You are going to get a science lesson tonight - After Wednesday's long session at LPCH, where a sample of Ellie's bone marrow was taken for the Day 8 data point, we were told to come back on Friday for end of the week labs (blood work) and they would discuss the results of the bone marrow analysis. Up through last weekend, I had been mentioning to you about the happy decline of her leukemia driven white blood cell (WBC) count. As the chemo drugs began their campaign in the very early stages, a dramatic lowering of the WBC's shows that there has been progress in her body with all mature blood cells. As we are finding out, getting rid of the bad guys already in the blood, thanks to the forumlation technology of today's cancer treatment world, is relatively predictable. The real key is to get after the source of where they are born, so to speak, and formed in their premature state - her bone marrow. We've hit her bottom point in terms of WBC count, so the focus shifts to how many of the bad guys can still be seen in her marrow. Her body has started to regenerate healthy WBC's and thus her counts from here on out will fluctuate a bit but are not expected to go below 1000 anymore. Back to her marrow - on the day of her diagnosis it was estimated to have been filled with 93% Leukemia cells. Why do I tell you all of this? Well, because on Friday the Day 8 marrow results given to us showed that her marrow now contains only 1% leukemia. YEEEEAAAAHHHHHH! In fact, the docs say the visual observation of her marrow which so clearly showed the cancer two weeks ago can no longer see a single cell with the naked eye. The 1% can only be detected through the minimal residual disease (MRD) testing they do under the microscope. Translation - Ellie has Equalized. (That's my girl!!!!)
Polly and I were very happy but we continue to hear what the docs are telling us and guard our excitement for now. The Day 8 data point is only a progress report, and we're still very early in this game. The docs did make sure to reiterate though that she is responding very well to the treatment and that gives the medical team alot of confidence. In turn, it fuels our family fire as well to keep at this with a fever pitch. They will not do another bone marrow check now until the goal date set all along for this first phase - Day 29 (which should be roughly July 27th with results coming back on July 29th).
Unfortunately, the 10 days that have gone by have taken their toll. She is very tired most of the day and rarely smiles much. As expected, her incredible hunger has reached a new level. We are in the pattern right now of eat then sleep pretty much all day with a few times up in the middle of every night. One of the hardest things is that she is still not old enough to verbally tell us in full sentecnes what is hurting her or what she may want at a given time. Polly has been amazing at being able to read her and make adjustments with the side effect meds, but it is always a work in progress. We are both hoping that when her steroid allotment for this phase ends on Wednesday, we might have a happier Ellie on our hands. We try as best we can to make her comfortable and give her the love she needs to keep fighting. Both sets of T&E's grandparents have been here this week and weekend to show them some love and provide immeasurable support for all of us. (Thanks, Mom & Dad)
The continued outpouring of support we receive daily from people in all walks of our lives is so wonderful. It helps us get going during a few bleary eyed mornings and helps sustain us during long days at the hospital. Ellie's strength is one of the most inspriational things we have ever seen. She has fought back from the very beginning....deliberately, effectively, and gracefully.
After a sucker punch at the beginning of a game she never wanted any part of, I'd say she has pulled even....and done so with all the time in the world left to go. GAME ON, cancer, GAME ON!
Wednesday, July 6, 2011
The Clinic - Day 8
Very draining day. Several parts where Polly had to hold me up and others where I held her. This is alot. I was thinking today in the waiting room about how this is a little like the hike to half dome in Yosemite. Polly and I made the trek almost a year to the day before the twins were born. It is a marathon 18 miles round trip and the first 2 miles are just a whole lot of "steep". With 17 miles left to go, your chest is already pounding, your legs have yet to fully warm up, your breakfast is doing somersaults in your belly, and you start to wonder why in god's good name did you decide to actually do this today. If you've never done the hike before, you cannot see half dome until you are just about at the base so you are heading "up" with only faith that yer going in the right direction. And there is very little than can prepare you for how difficult it is (especially that cable climb the last 500 feet to the top). That being said, half dome pales in comparison to this and we're still in that awful first two mile stretch.
We took Ellie back to LPCH at 7am this morning for a full 6 hours. She was in pre-op for an hour to get her injection sites numbed and then Polly and I sat with her in the procedure room (not quite an O.R. but close) until she went to sleep. She had a sample of bone marrow taken for her Day 8 data point and an intrathecal injection (streight into her spine) of Methotrexate. I don't care how simple the procedure might have been according to the doctor....to see your child laying on a table with 10 machines around her while she worriedly looks up as things are being attached to her is awful. Damn this disease....
The procedure took about 45 min and then Polly and I met her in recovery. The nice thing about recovery is that we know our daughter's tendencies now and can easily provide the one thing that makes her feel better - food. She's eating Yo Baby Plain yogurt now like it is going out of style. Seriously, Whole Foods should let us bypass the store now and just let us back the car up to the loading dock upon arrival. Prior to her getting out of surgery, we were able to meet briefly with one of the attending docs who gave us the cytogenetic report we had been waiting for. Everything came back as expected on the chromosomes for the basic form of ALL. This was good news because there were no adverse or strange mutations that they look for which could worsen her prognosis.
The hardest thing right now is that we, of course, are looking for reassurance which no doctor can give 100%. I've felt like patience was a virtue I had attained long ago. It is just tough to hear half answers that are not completely definitive and so being patient is very difficult. While we get tidbits of what is supposed to be good news, I hope you'll excuse us for not leaping out of our seats with joy.
After she came fully out of anethesia, we were taken to a small room for her Day 8 chemo treatments. She recieves both Vincristine and Daunorubicin through her PICC line on these four major outpatient days (seemingly every Wednesday at this point) during the Induction phase. She handles stuff through her PICC line now quite well but the pain from the bone marrow poke not so much. I would say my patience wears thin here because as soon as you ask for pain meds, it takes an hour of paperwork for it to get to her. It isn't the nurses' fault. Their patience with us is incredible, certainly alot better than some of the 2nd year resident docs we've seen both with Timmy and on a couple of occasions last week with Ellie. Its part of being at a research hospital, but its still my daughter screaming at length in front of us. I am praying that this pattern of discomfort gets easier the more we visit the clinic.
We were fully introduced to the clinic lifestyle today. The place where we will be going now twice a week for close to the next 9 months. Its one of those incredible crossovers you do walking through those double doors for the first time as a patient after spending countless times walking by it on the outside or noticing the clinic's sign from afar. Inside is a large waiting room of families going through the same things we are though perhaps at different stages. Several of the kids there know the staff by their first names so it felt like a place we could be very comfortable at somewhere down the line. Its a place nobody asks to be a part of and at least for us today was a place for tears. Deep down, I know they work their fair share of miracles, so for Ellie's sake, I will embrace it and do as I'm told.
Polly made the very difficult decision to have Ellie's hair cut tomorrow by her stylist. We're told it will begin falling out in about a week and so we're going to do this now to save ourselves some grief. Never imagined her first haircut would be like this. But this way, we get to do it on our own family's terms instead of cancer's terms. I'm so thankful that she won't remember most of this.
Polly and I made it to the top of half dome eventually. It was my second time climbing that trail so it was more enjoyable to see Polly get the rush of accomplishment than anything else. We hiked down the hill after 12 hours round trip only to find our car had a flat tire. It's never straight forward with us, haven't you figured that out by now? We had control of our feet on that day and when all was said and done, we handled what was thrown at us. After our tears in the waiting room today, I had to remind myself that though it isn't tangible, I must keep control of my faith. Its damn hard, but with no 100% reassurances, faith is all we have.
Thankyou for listening to me think out loud tonight. Please keep praying for my little girl.
We took Ellie back to LPCH at 7am this morning for a full 6 hours. She was in pre-op for an hour to get her injection sites numbed and then Polly and I sat with her in the procedure room (not quite an O.R. but close) until she went to sleep. She had a sample of bone marrow taken for her Day 8 data point and an intrathecal injection (streight into her spine) of Methotrexate. I don't care how simple the procedure might have been according to the doctor....to see your child laying on a table with 10 machines around her while she worriedly looks up as things are being attached to her is awful. Damn this disease....
The procedure took about 45 min and then Polly and I met her in recovery. The nice thing about recovery is that we know our daughter's tendencies now and can easily provide the one thing that makes her feel better - food. She's eating Yo Baby Plain yogurt now like it is going out of style. Seriously, Whole Foods should let us bypass the store now and just let us back the car up to the loading dock upon arrival. Prior to her getting out of surgery, we were able to meet briefly with one of the attending docs who gave us the cytogenetic report we had been waiting for. Everything came back as expected on the chromosomes for the basic form of ALL. This was good news because there were no adverse or strange mutations that they look for which could worsen her prognosis.
The hardest thing right now is that we, of course, are looking for reassurance which no doctor can give 100%. I've felt like patience was a virtue I had attained long ago. It is just tough to hear half answers that are not completely definitive and so being patient is very difficult. While we get tidbits of what is supposed to be good news, I hope you'll excuse us for not leaping out of our seats with joy.
After she came fully out of anethesia, we were taken to a small room for her Day 8 chemo treatments. She recieves both Vincristine and Daunorubicin through her PICC line on these four major outpatient days (seemingly every Wednesday at this point) during the Induction phase. She handles stuff through her PICC line now quite well but the pain from the bone marrow poke not so much. I would say my patience wears thin here because as soon as you ask for pain meds, it takes an hour of paperwork for it to get to her. It isn't the nurses' fault. Their patience with us is incredible, certainly alot better than some of the 2nd year resident docs we've seen both with Timmy and on a couple of occasions last week with Ellie. Its part of being at a research hospital, but its still my daughter screaming at length in front of us. I am praying that this pattern of discomfort gets easier the more we visit the clinic.
We were fully introduced to the clinic lifestyle today. The place where we will be going now twice a week for close to the next 9 months. Its one of those incredible crossovers you do walking through those double doors for the first time as a patient after spending countless times walking by it on the outside or noticing the clinic's sign from afar. Inside is a large waiting room of families going through the same things we are though perhaps at different stages. Several of the kids there know the staff by their first names so it felt like a place we could be very comfortable at somewhere down the line. Its a place nobody asks to be a part of and at least for us today was a place for tears. Deep down, I know they work their fair share of miracles, so for Ellie's sake, I will embrace it and do as I'm told.
Polly made the very difficult decision to have Ellie's hair cut tomorrow by her stylist. We're told it will begin falling out in about a week and so we're going to do this now to save ourselves some grief. Never imagined her first haircut would be like this. But this way, we get to do it on our own family's terms instead of cancer's terms. I'm so thankful that she won't remember most of this.
Polly and I made it to the top of half dome eventually. It was my second time climbing that trail so it was more enjoyable to see Polly get the rush of accomplishment than anything else. We hiked down the hill after 12 hours round trip only to find our car had a flat tire. It's never straight forward with us, haven't you figured that out by now? We had control of our feet on that day and when all was said and done, we handled what was thrown at us. After our tears in the waiting room today, I had to remind myself that though it isn't tangible, I must keep control of my faith. Its damn hard, but with no 100% reassurances, faith is all we have.
Thankyou for listening to me think out loud tonight. Please keep praying for my little girl.
Sunday, July 3, 2011
Peace
Ellie came home tonight. Highest amount of energy she has had all week. She sat next to her brother to have a good dinner and then fell sound asleep in her own bed without a peep. I am thankful for today and we are thankful, as a family, for your prayers. As least for tonight, all is right in the world. :)
Saturday, July 2, 2011
Almost Home - Day 5
While wishing that title was more metaphorical than anything else, we'll gladly take the literal interpretation for now. Ellie has been weened off of her IV fluids since this morning and is in enough of an initial groove with her meds that we can start administering them at home very soon. If things can hold steady tonight, then she has a good shot of being discharged tomorrow. Though one thing we've learned through Timmy, don't bet on discharge until you are actually walking out the door. The docs will do a electrolyte check tomorrow (called a Chem-10 panel) and more blood work. Her hemoglobin count (red blood cells, basically) seems to be holding steady slightly about 8K and her platelet count above 10. If either drops below those marks, she'll need transfusions tomorrow. Transfusions are somewhat routine with leukemia patients, so it wouldn't necessarily prevent us from going home. Low red blood cells lead to anemia, pale skin, and more fatigue. Her white blood cell count is now hovering around 1000. Given the peak measurement we had of around 83K on Monday, this means that roughly 98.8% of the mature bad guys have been eliminated (I teach math). Shock & Awe INDEED!
She has been very tired and not wanting to do much of anything which as I've said before it tough to watch for long periods of time. Today we got some playtime going with Mr Potato Head and our neighbor's awesome gift of a wallet (just for her) with about 50 laminated "credit cards". I guess folks read the blog! She also perks up with the smell of "yellow pasta" (mac n' cheese). A girl after my own childhood heart. The highlight of the day was seeing her leave our grasps for a moment to accept an invitation to color at a nearby table with another little girl in the lounge. Though all she did was retrieve a piece of paper/crayon and then come immediately back to us....watching her walk a bit was really great.
The big days for Chemo treatments in this first month are 1, 4, 8, 15, and 22. She handled her lone dose of PEG-Aspargine yesterday very well (one shot in each leg - ouch). This Wednesday will be Day 8 (pushed back a day to allign with doctor's schedules). It will require us to be in the Day Hospital clinic at LPCH most of the day for her two Chemo drugs that are given through her PICC line and she'll also have a procedure under general anethesia where they'll take another bone marrow sample from her hip. This will be Polly and I's fourth experience with general anethesia on our kids if you include Timmy's two eye surgeries from a year and a half ago.....and well, it sucks. Not sure how else to say it. Rest assured I will have some choice words for cancer while I sit in the waiting room. (Polly will stop me before most are verbalized) The marrow sample will give us an idea of progress but we've been told to not look into it as a bench mark toward potential remission. So, we'll keep our eyes (and PRAYERS!) on the end of the month for that.
A few folks have inquired about donating blood. You guys are our heros, seriously. The doctors say it is best for Ellie to recieve blood only from the general blood bank, but we encourage you to donate anyway so that someone else may benefit OR it replaces the amount lost in the Bank because Ellie recieved it. We are told that giving blood directly to Ellie would eliminate somebody as a possible bone marrow donor for Ellie (Polly and I included), so this is important for our family members to know. Ellie has blood type A+ and according to what I know from the red cross, she can recieve transfusions of either type A+ or type O blood.
Some site notes - I am relatively new to this blog thing, so checking out the page "stats" is kinda fun. It tracks which countries our viewers are reading the blog in and how many pageviews from those countries. Outside of the USA, we have stats showing a handful of page views in Australia (thankyou, Stacey), 2 views in Turkey, 1 in Germany, 1 in the Phillipines, and 1 in Jordan. (Jordan?) Ellie has gone global. Also of note for those that seem to have trouble leaving comments.....it seems you need a GMAIL account to do so. Very easy to get one.
There are two coaching figures who have indirectly had a significant impact on my life and the work ethic on which I approach a great many things. Both college basketball coaches, ironically. One, of course, is John Wooden because of his devotion to fundamental building blocks and unwaivering commitment to his own principles. But the other guy is the one I want to mention here. I have quoted his words to groups & teams in the past, have donated to his "V" foundation long before Ellie was born, and now his words mean something much closer to the heart. His name is Jimmy Valvano, head coach at North Carolina St in the 1980's. His timeless speech came at the 1993 ESPY awards a month before he lost his own battle with cancer. You can see his speech by clicking HERE.
His sacrifice and his foundation has brought about millions of dollars to help improve research on treatments like the ones Ellie is receiving now. Truly remarkable.
She has been very tired and not wanting to do much of anything which as I've said before it tough to watch for long periods of time. Today we got some playtime going with Mr Potato Head and our neighbor's awesome gift of a wallet (just for her) with about 50 laminated "credit cards". I guess folks read the blog! She also perks up with the smell of "yellow pasta" (mac n' cheese). A girl after my own childhood heart. The highlight of the day was seeing her leave our grasps for a moment to accept an invitation to color at a nearby table with another little girl in the lounge. Though all she did was retrieve a piece of paper/crayon and then come immediately back to us....watching her walk a bit was really great.
The big days for Chemo treatments in this first month are 1, 4, 8, 15, and 22. She handled her lone dose of PEG-Aspargine yesterday very well (one shot in each leg - ouch). This Wednesday will be Day 8 (pushed back a day to allign with doctor's schedules). It will require us to be in the Day Hospital clinic at LPCH most of the day for her two Chemo drugs that are given through her PICC line and she'll also have a procedure under general anethesia where they'll take another bone marrow sample from her hip. This will be Polly and I's fourth experience with general anethesia on our kids if you include Timmy's two eye surgeries from a year and a half ago.....and well, it sucks. Not sure how else to say it. Rest assured I will have some choice words for cancer while I sit in the waiting room. (Polly will stop me before most are verbalized) The marrow sample will give us an idea of progress but we've been told to not look into it as a bench mark toward potential remission. So, we'll keep our eyes (and PRAYERS!) on the end of the month for that.
A few folks have inquired about donating blood. You guys are our heros, seriously. The doctors say it is best for Ellie to recieve blood only from the general blood bank, but we encourage you to donate anyway so that someone else may benefit OR it replaces the amount lost in the Bank because Ellie recieved it. We are told that giving blood directly to Ellie would eliminate somebody as a possible bone marrow donor for Ellie (Polly and I included), so this is important for our family members to know. Ellie has blood type A+ and according to what I know from the red cross, she can recieve transfusions of either type A+ or type O blood.
Some site notes - I am relatively new to this blog thing, so checking out the page "stats" is kinda fun. It tracks which countries our viewers are reading the blog in and how many pageviews from those countries. Outside of the USA, we have stats showing a handful of page views in Australia (thankyou, Stacey), 2 views in Turkey, 1 in Germany, 1 in the Phillipines, and 1 in Jordan. (Jordan?) Ellie has gone global. Also of note for those that seem to have trouble leaving comments.....it seems you need a GMAIL account to do so. Very easy to get one.
There are two coaching figures who have indirectly had a significant impact on my life and the work ethic on which I approach a great many things. Both college basketball coaches, ironically. One, of course, is John Wooden because of his devotion to fundamental building blocks and unwaivering commitment to his own principles. But the other guy is the one I want to mention here. I have quoted his words to groups & teams in the past, have donated to his "V" foundation long before Ellie was born, and now his words mean something much closer to the heart. His name is Jimmy Valvano, head coach at North Carolina St in the 1980's. His timeless speech came at the 1993 ESPY awards a month before he lost his own battle with cancer. You can see his speech by clicking HERE.
His sacrifice and his foundation has brought about millions of dollars to help improve research on treatments like the ones Ellie is receiving now. Truly remarkable.
Subscribe to:
Posts (Atom)