Remember that time that I felt ridiculously downtrodden and wanted something, anything really, to work out for us? And I am easily impressed so this could be as simple as free parking at the hospital or as fabulous as a call saying "whoops our mistake, there was no leukemia in your daughter. Don't call us, we will call you".
That would be on par with Jesus's return, another event that I am certain will make me a little happy and not find myself wishing wine tasted like coca-cola so I could drink my sorrows away as I often want to do.
Rabbit trails? I know. Read on and see how something worked out for us, for once.
It was a long day in Atlanta and while Chad and I are very well acquainted with Scottish Rite, the Egleston campus was a whole different (much larger, more expensive) world. It took us a minute to find parking much less the way to the clinic. And while at the clinic it was confusing because they do things differently and we were totally getting the same look we give to people we see at Scottish Rite who look confused. Happily Piper did wonderful throughout the exam, throughout our meeting with Dr. Haight and in spite of the fact that walking around was not entirely possible due to space and health stipulations for the transplant patients.
The meeting went okay at best. Chad and I both left feeling a little less optimistic. In normal person language, Dr. Haight felt like Piper will need to be in remission or at the very least, under 1% MRD (minimal residual disease). With even the two percent she currently has she will probably not survive a transplant as well as the risk of relapse being almost definite. They are still weeding through the Bone Marrow Donor list, which is a total of 11 choices as well as the Cord Blood Donors who number 8. Dr. Haight would rather use a BM donor especially since another round of chemo is necessary and we should have a little more time to whittle the donors down into the best match. While she was very knowledgeable and kind, she was very matter of fact that Piper will need to meet the remission requirement in order for her to proceed.
Obviously that was not the thing that worked out for us. While we were at Egleston she had a CBC done to see if the leukemia was yet showing up in her blood work. If it had they would have been beginning chemo inpatient asap and things would be getting a little crazy once again.
Praise God.
Its not.
We are home. As in the apartment we pay rent at, not the hospital that we abhor/love because of what the people we know are doing to Piper there. As far as her blood work goes her little body has no idea that cancer is in its midst. So after a quick call to Scottish Rite we were sent on home. Music to my ears. Makes me want to dance. Big, big, big smiles for me...and tears, of course.
(Because its Tuesday and that's the scheduled day to sob regardless of location)
Tomorrow we will begin oral chemo at home twice a day for the first seven days of this new 28 day round. On Friday the 14th we will admit back to the hospital for Clafarabine and ARA-C on days 8-12 and she will remain there as long as they deem necessary (but hopefully not another six week stay) while continuing to receive the oral chemo but nothing else. After her counts recover at the end of her round she will have another bone marrow aspirate and hopefully at that time she will finally be in remission. I am not certain what would happen if she still has MRD but I am sure it will not be a good sign.
I was so blasted excited about being home for an entire ten more days that I bought the girls a new bedroom suite that (of course) needs to be stripped and repainted. You know, since I have all this free time. Today was so totally busy but in that happy way. I managed to plant mums, clean my floors, visit both Walmart and Trader Joes after doing the morning carpool, sand the new dressers, visit with my in laws and make a whole chicken in the crock pot for dinner. Mostly, I loved on my girls.
I have always loved the simple business of being a mom and I live for days like these where I am only nurturing, loving and being with my favorite people in the world. The hospital seems so very far away and for the next 9 days I shall pretend it doesn't even exist.
This really works out for me.
Wednesday, October 5, 2011
Monday, October 3, 2011
tomorrow (again)
Apparently I am running out of witty...most of my recent post titles are annoying even to me. Big halfhearted promises to improve on that after, say, leukemia is cured and I am working again will all of my own brain cells plus a good nights sleep.
Tomorrow at 10am Chad, Piper and I will be meeting with the Bone Marrow Transplant team at Egleston. There they will tell us what they feel is her best options at this point...as far as I know a transplant is still the goal but how they chose to treat those remaining leukemia cells in her until then has not yet been told to us. While we are meeting with the team we will also be having Piper checked out. They will be asking us questions about her and looking her over to ensure they feel she is in good enough health to go through with the rigors of a transplant. Praise God, Piper is in the best health of her little life. She is strong and this is a very good thing.
Leukemia is developed in the bone marrow. At some point it begins to spill out into her blood and that is when it is typically detected. If there are suspicious cells in her blood work that is a sign to hurry, otherwise we should have a little bit more time to line up ducks and take action. Tomorrows CBC will tell us whether we admit then or whether we are free for a few more days.
Um, Id like to be free if anyone is wondering.
On a much more exciting note, my Piper walked from our bed to the window...a good 7 steps, by herself. There were tears. And when Chad and I realized she was enjoying our Hershey's toffee/almond nugget chocolates, we were quick to use them to bribe her to do more walking. She is so close...I can feel it. Since she has the walker, life is just easier but walking independently would be divine.
Here are some pictures from today when I told myself to "get the hell out of your PJ's Susanna and engage in some retail therapy". We went to Target...there was no puking so it was a major success. Of course, Piper remembered where the Elmo display was IN THE BACK OF THE STORE and Linley cannot pass up anything with sequins on it without begging for it so it was not unlike herding whining sheep with walkers to get the two of them back to the trash bag and shampoo aisle.
I was so pooped after that trip that I drank TWO coca-colas at the Mexican restaurant for lunch with my mom and the girls...and they were gooood.
(both the girls and the coca-cola)
Tomorrow at 10am Chad, Piper and I will be meeting with the Bone Marrow Transplant team at Egleston. There they will tell us what they feel is her best options at this point...as far as I know a transplant is still the goal but how they chose to treat those remaining leukemia cells in her until then has not yet been told to us. While we are meeting with the team we will also be having Piper checked out. They will be asking us questions about her and looking her over to ensure they feel she is in good enough health to go through with the rigors of a transplant. Praise God, Piper is in the best health of her little life. She is strong and this is a very good thing.
Leukemia is developed in the bone marrow. At some point it begins to spill out into her blood and that is when it is typically detected. If there are suspicious cells in her blood work that is a sign to hurry, otherwise we should have a little bit more time to line up ducks and take action. Tomorrows CBC will tell us whether we admit then or whether we are free for a few more days.
Um, Id like to be free if anyone is wondering.
On a much more exciting note, my Piper walked from our bed to the window...a good 7 steps, by herself. There were tears. And when Chad and I realized she was enjoying our Hershey's toffee/almond nugget chocolates, we were quick to use them to bribe her to do more walking. She is so close...I can feel it. Since she has the walker, life is just easier but walking independently would be divine.
Here are some pictures from today when I told myself to "get the hell out of your PJ's Susanna and engage in some retail therapy". We went to Target...there was no puking so it was a major success. Of course, Piper remembered where the Elmo display was IN THE BACK OF THE STORE and Linley cannot pass up anything with sequins on it without begging for it so it was not unlike herding whining sheep with walkers to get the two of them back to the trash bag and shampoo aisle.
I was so pooped after that trip that I drank TWO coca-colas at the Mexican restaurant for lunch with my mom and the girls...and they were gooood.
(both the girls and the coca-cola)
Saturday, October 1, 2011
Yesterday.
Yesterday was quite possibly the most difficult day that I have had in ages. More difficult that diagnosis, more difficult than relapse even. Difficult, dark and despondent.
While out to lunch with Piper and some family, I received the results of the bone marrow aspirate from Tuesday. Pipers little body still has 2% cancer cells roaming about. She had 68% when she relapsed so there is a definite improvement but not enough that they consider her in remission. Because they were hoping that Piper would be in remission they have now begun calling St Judes and the National Cancer Institute to get additional opinions as to what is next.
We have a few options on the table:
1) more conventional chemo to achieve remission then a bone marrow transplant asap.
2) go to bone marrow transplant even with the few leukemia cells we see.
3) attempt experimental chemo and then a transplant.
All of these are possibilities...Dr. Bergsagel began making the calls on Friday and Chad and I have a consultation with the bone marrow transplant team on Tuesday at 10:00am to review Piper and to hear what plan they have all come up with. After that appointment at Egleston we will go over to Scottish Rite and have a clinic visit in which they will do the typical CBC and if there is leukemia showing up in her blood work we will be immediately admitted and chemo will begin again. If there is not suspicious cells within her blood work we will proceed aggressively with the treatment decided by the transplant team within a few days.
When I spoke with Dr. Bergsagel on Friday at lunchtime I felt a wave of pure terror roll over me. Physically my head began to throb, my chest began to ache and my fingertips became numb. Somehow I managed to ask more questions and I managed to confidently relay all of this information to my mom and sister and later, to Chad. I remember little of what I said. My fingertips did not regain feeling until dinnertime and my sobs were hugging the back of my throat with a ferocity that only fear can retain.
For the first time ever I allowed my thoughts to go there. To think of losing Piper. To acknowledge that the chance of losing her outweighs the chance that I will cry tears when she walks into her kindergarten class someday. And once I began to imagine how I would feel or how things would be without Piper Jean Needham growing in my care I lost it. It took 3 glasses of wine, one nighttime cuddle on a balcony with Piper, the company of dear friends, almost an entire bowl of chocolate, a warm fire on a chilly night and the way my Linley likes to dance to rise me out of my funk. When I crawled into bed with both girls and Chad I had calmed myself. I was no longer imagining how I would respond to people asking if Linley was my only child or what I would do with all of Pipers toys. I had forgotten the words I would speak over Pipers small body and how I thought I would handle seeing other children grow up while my own daughter was not given that option.
Let me be clear now. Nobody is saying this is the end. Medically speaking there are still many options...and we will do what it takes. She is not failing...she is fighting. Pipers oncology team is still tentatively optimistic for a cure, but the longer Piper fights the smarter her cancer grows. If I ever viewed leukemia with rose colored glasses ( and I don't think I ever have) I no longer do. I have seen too many families struggle, to many children die before their time and too many times I have hoped and prayed to not be tested that much.
Yesterday and today I cried. I allowed myself to feel the depths of my fears and I do not like it one bit. There is no time for whining or complaining. No time for fretting or fearing. All we have is the moments...hopefully, these moments will connect and Piper will have a long and beautiful life ahead of her. It is possible.
What is not possible is allowing those dark possibilities and plans to come to hinder my only goal. To love God. To serve Him. To attempt to be truly faithful despite what my heart feels...my soul rests in Him. I have a trust and an intimacy with God that I do not believe is possible before experiencing the head throbbing, chest aching, numb fingertips blatant knowledge we are nothing without Him. My emotions and whimsy have no place when I profess to trust Him.
"Trust in the Lord with all your heart
and lean not on your own understanding
in all your ways submit to Him
and He will direct your paths"
(Proverbs 3:5-6)
While out to lunch with Piper and some family, I received the results of the bone marrow aspirate from Tuesday. Pipers little body still has 2% cancer cells roaming about. She had 68% when she relapsed so there is a definite improvement but not enough that they consider her in remission. Because they were hoping that Piper would be in remission they have now begun calling St Judes and the National Cancer Institute to get additional opinions as to what is next.
We have a few options on the table:
1) more conventional chemo to achieve remission then a bone marrow transplant asap.
2) go to bone marrow transplant even with the few leukemia cells we see.
3) attempt experimental chemo and then a transplant.
All of these are possibilities...Dr. Bergsagel began making the calls on Friday and Chad and I have a consultation with the bone marrow transplant team on Tuesday at 10:00am to review Piper and to hear what plan they have all come up with. After that appointment at Egleston we will go over to Scottish Rite and have a clinic visit in which they will do the typical CBC and if there is leukemia showing up in her blood work we will be immediately admitted and chemo will begin again. If there is not suspicious cells within her blood work we will proceed aggressively with the treatment decided by the transplant team within a few days.
When I spoke with Dr. Bergsagel on Friday at lunchtime I felt a wave of pure terror roll over me. Physically my head began to throb, my chest began to ache and my fingertips became numb. Somehow I managed to ask more questions and I managed to confidently relay all of this information to my mom and sister and later, to Chad. I remember little of what I said. My fingertips did not regain feeling until dinnertime and my sobs were hugging the back of my throat with a ferocity that only fear can retain.
For the first time ever I allowed my thoughts to go there. To think of losing Piper. To acknowledge that the chance of losing her outweighs the chance that I will cry tears when she walks into her kindergarten class someday. And once I began to imagine how I would feel or how things would be without Piper Jean Needham growing in my care I lost it. It took 3 glasses of wine, one nighttime cuddle on a balcony with Piper, the company of dear friends, almost an entire bowl of chocolate, a warm fire on a chilly night and the way my Linley likes to dance to rise me out of my funk. When I crawled into bed with both girls and Chad I had calmed myself. I was no longer imagining how I would respond to people asking if Linley was my only child or what I would do with all of Pipers toys. I had forgotten the words I would speak over Pipers small body and how I thought I would handle seeing other children grow up while my own daughter was not given that option.
Let me be clear now. Nobody is saying this is the end. Medically speaking there are still many options...and we will do what it takes. She is not failing...she is fighting. Pipers oncology team is still tentatively optimistic for a cure, but the longer Piper fights the smarter her cancer grows. If I ever viewed leukemia with rose colored glasses ( and I don't think I ever have) I no longer do. I have seen too many families struggle, to many children die before their time and too many times I have hoped and prayed to not be tested that much.
Yesterday and today I cried. I allowed myself to feel the depths of my fears and I do not like it one bit. There is no time for whining or complaining. No time for fretting or fearing. All we have is the moments...hopefully, these moments will connect and Piper will have a long and beautiful life ahead of her. It is possible.
What is not possible is allowing those dark possibilities and plans to come to hinder my only goal. To love God. To serve Him. To attempt to be truly faithful despite what my heart feels...my soul rests in Him. I have a trust and an intimacy with God that I do not believe is possible before experiencing the head throbbing, chest aching, numb fingertips blatant knowledge we are nothing without Him. My emotions and whimsy have no place when I profess to trust Him.
"Trust in the Lord with all your heart
and lean not on your own understanding
in all your ways submit to Him
and He will direct your paths"
(Proverbs 3:5-6)
Wednesday, September 28, 2011
Makes me smile.
My Linley makes me smile.
There is a joy and simplicity about her little self that makes me smile a million times a day. She is smart. She is observant. She is compassionate. She continues to accept the mess that our life so often is and she is a stronger little lady because of it.
For two years she has thrust to the sidelines at a moments notice. She adores the times that I am able to squeeze quality time into and she abhors being without her sister at night. Because her new school is showering her with attention, prayer and encouragement she has been thriving regardless of our presence. I'm not sure how she maintains her sweet optimism but I am so very happy that she does...it soothes this soul.
Yet another thing my firstborn does a lot of these days, in the midst of making me smile, is practice her handwriting. And by practice her handwriting I mean she is writing on anything that will stay still long enough. (including on her bicep today at school but that's another story for another day) Linley doodles on this, Linley doodles on that, Linley writes me a note here, there and everywhere.
I love that.
Apart from having little notes spilling out of my purse at a moments notice, she has now begun writing notes to the general public. No door, wall or surface is safe from her and her sweet thoughts.
This just helps me to smile just a little more at each turn in my home.
(
(***the middle note reads like this:
Bunk bed rules
Not allowed under 6, but six and up you can
If you weigh more than 100 pounds you can
Linley is six.
If you are six you can come and if you are over six that is okay)
Now see if you can envision my girl composing little notes and not smile like I do.
There is a joy and simplicity about her little self that makes me smile a million times a day. She is smart. She is observant. She is compassionate. She continues to accept the mess that our life so often is and she is a stronger little lady because of it.
For two years she has thrust to the sidelines at a moments notice. She adores the times that I am able to squeeze quality time into and she abhors being without her sister at night. Because her new school is showering her with attention, prayer and encouragement she has been thriving regardless of our presence. I'm not sure how she maintains her sweet optimism but I am so very happy that she does...it soothes this soul.
Yet another thing my firstborn does a lot of these days, in the midst of making me smile, is practice her handwriting. And by practice her handwriting I mean she is writing on anything that will stay still long enough. (including on her bicep today at school but that's another story for another day) Linley doodles on this, Linley doodles on that, Linley writes me a note here, there and everywhere.
I love that.
Apart from having little notes spilling out of my purse at a moments notice, she has now begun writing notes to the general public. No door, wall or surface is safe from her and her sweet thoughts.
This just helps me to smile just a little more at each turn in my home.
(
(***the middle note reads like this:
Bunk bed rules
Not allowed under 6, but six and up you can
If you weigh more than 100 pounds you can
Linley is six.
If you are six you can come and if you are over six that is okay)
Now see if you can envision my girl composing little notes and not smile like I do.
Monday, September 26, 2011
Tomorrow.
Tomorrow is Pipers much anticipated, long awaited bone marrow aspirate. Supposedly this will be taking place at 11:00am but the nurse/friend let it slip that there was actually a question mark followed by the word "tentatively" on the schedule sheet.
As my Piper would say, "fabaduss" and waiting for hours with a two year old who cannot eat nor drink is indeed as fabulous as you are imagining.
When Piper is sedated tomorrow at 11:00am ( or 3:35 or 6pm or...whenever) she will have marrow taken out to have examined intensely to see if there is any leukemia evident. She will also have methotrexate, arac and hydrocortisone administered to her spine to continue to keep the beast from invading. We will hear results within a day or two and that will give the doctors the information they need to make a plan. Because Pipers anc is now up to 150 and her wbc is up to 455 there is a chance that we will be going home within the week. So we wait...does anyone else see a pattern?
The powers that be over at the Bone Marrow Registry have found 11 potential matches for Piper. My heart leaps when I think of this...The knowledge that somewhere out there is someone who can quite possibly be prepping to literally save my daughters life is mind boggling. I can only hope. pray. wish big big big things. And wait...of course.
Last Saturday I met with 500 of my dearest friends from around the state. It was a luncheon intended to celebrate the mothers of the children in the area who are affected by various cancers. I was able to hug the neck of a mommy whom I love dearly...she lost her sweet son the day before Piper relapsed. I was also able to sit next to another favorite lady whose own daughter is thriving off of treatment. The extremes at which childhood cancer can range is amazing...and yet, I rarely meet a woman who is not able to do whatever it is that is thrust upon them.
Childhood cancer be damned but I am consoled by this motley camaraderie that it has made of women who really, just love our children and will do what it takes to raise them.
As my Piper would say, "fabaduss" and waiting for hours with a two year old who cannot eat nor drink is indeed as fabulous as you are imagining.
When Piper is sedated tomorrow at 11:00am ( or 3:35 or 6pm or...whenever) she will have marrow taken out to have examined intensely to see if there is any leukemia evident. She will also have methotrexate, arac and hydrocortisone administered to her spine to continue to keep the beast from invading. We will hear results within a day or two and that will give the doctors the information they need to make a plan. Because Pipers anc is now up to 150 and her wbc is up to 455 there is a chance that we will be going home within the week. So we wait...does anyone else see a pattern?
The powers that be over at the Bone Marrow Registry have found 11 potential matches for Piper. My heart leaps when I think of this...The knowledge that somewhere out there is someone who can quite possibly be prepping to literally save my daughters life is mind boggling. I can only hope. pray. wish big big big things. And wait...of course.
Last Saturday I met with 500 of my dearest friends from around the state. It was a luncheon intended to celebrate the mothers of the children in the area who are affected by various cancers. I was able to hug the neck of a mommy whom I love dearly...she lost her sweet son the day before Piper relapsed. I was also able to sit next to another favorite lady whose own daughter is thriving off of treatment. The extremes at which childhood cancer can range is amazing...and yet, I rarely meet a woman who is not able to do whatever it is that is thrust upon them.
Childhood cancer be damned but I am consoled by this motley camaraderie that it has made of women who really, just love our children and will do what it takes to raise them.
Tuesday, September 20, 2011
update 9/21
At the mostly polite, definitely insistent encouragement of so many of y'all, I am checking in. Miss Piper has fallen asleep tonight before 10:00 and I have completed reading my issue of People magazine so all my procrastination techniques have expired. Not that I don't have things to update but rather I have the uncontrollable desire to begin raging/tirade/complaining about on here.
I wont, but I do that sometimes these days.
So Piper is well. She received 52 doses of chemo within the 28 days of this round. Amazingly she all but sailed through it without any major issues. A few low grade fevers were quickly abated with Tylenol and nothing has grown on any cultures done. Her CMV continues to lie dormant. Physical, occupational and speech therapies typically go well and she is using her new walker like a pro. Her hair began the falling out process but she is rocking the baby chick look. Pipers appetite vanished once the mouth sores began but she is slowly beginning to trust food again. Lortab has been a friend at times as she just generally felt bad.
Oh and she got 2 of her two year molars.
Oh yes...while on Lortab.
So, that was nice.
As some of you know, Chad, Linley and I's HLA typing came back and none of us are a compatible match for Piper. I'm not sure whether to feel relieved or despondent. Frankly, with the high rate of relapse with Piper Im not sure if I wanted this to be on Linleys sweet six year old shoulders anyways. Apparently there is no evidence saying that a related donor lessens the chance of relapse but a related donor does make things less complicated, both medically and time wise. At this time we are awaiting results from the bone and cord blood banks...our oncologist feels confident that we will be able to find multiple donors for Piper. Many people have asked to donate to Piper and unfortunately it doesn't work that way...not that I am entirely clear on how it works but go to www.bethematch.com and learn more.
We are still at the hospital because it is taking a ridiculous amount of time to have her counts rise to a level that is first, high enough to do the lumbar aspirate and see if she is back in remission and two, high enough to safely go home. Pipers ANC is still hanging out between 10 and 30. A normal child's ANC is between 2500 and 6000.
(Oh that Piper, shes always trying to get a little more attention.)
Once her ANC reaches at least 300 she will have her lumbar aspirate and we will see if those 28 days did the job. Then, hopefully we will be able to take her home for a few days and the Doctors both here and at Egleston will be able to give us a road map or a plan of attack, if you will.
And I will.
I am weary of this phase. "Attack" sounds good. "Attack" also sounds promising. I'm ready to get moving and get attacking and hopefully, prayerfully someday we will look back at this and rejoice we had the strength to put on our fighting gear and give it all we could for our sweet girl.
This strength is not ours but given to us from God...I cannot imagine going through this without the raw ache in my soul being filled with His hope and promise. His goodness is shown in the giggle of Piper at bedtime, in the presence of a Starbucks in the hospital lobby, the sweet smell of my 10 week old nephew sleeping on my chest while we reside in the same room as we did when Piper was first diagnosed at ten weeks old. His goodness did not end when my life began to feel a struggle, in fact it truly began then.
In this struggle I have learned to love, trust and rejoice.
That is a goodness I will never see anywhere else apart from in Gods grip.
I wont, but I do that sometimes these days.
So Piper is well. She received 52 doses of chemo within the 28 days of this round. Amazingly she all but sailed through it without any major issues. A few low grade fevers were quickly abated with Tylenol and nothing has grown on any cultures done. Her CMV continues to lie dormant. Physical, occupational and speech therapies typically go well and she is using her new walker like a pro. Her hair began the falling out process but she is rocking the baby chick look. Pipers appetite vanished once the mouth sores began but she is slowly beginning to trust food again. Lortab has been a friend at times as she just generally felt bad.
Oh and she got 2 of her two year molars.
Oh yes...while on Lortab.
So, that was nice.
As some of you know, Chad, Linley and I's HLA typing came back and none of us are a compatible match for Piper. I'm not sure whether to feel relieved or despondent. Frankly, with the high rate of relapse with Piper Im not sure if I wanted this to be on Linleys sweet six year old shoulders anyways. Apparently there is no evidence saying that a related donor lessens the chance of relapse but a related donor does make things less complicated, both medically and time wise. At this time we are awaiting results from the bone and cord blood banks...our oncologist feels confident that we will be able to find multiple donors for Piper. Many people have asked to donate to Piper and unfortunately it doesn't work that way...not that I am entirely clear on how it works but go to www.bethematch.com and learn more.
We are still at the hospital because it is taking a ridiculous amount of time to have her counts rise to a level that is first, high enough to do the lumbar aspirate and see if she is back in remission and two, high enough to safely go home. Pipers ANC is still hanging out between 10 and 30. A normal child's ANC is between 2500 and 6000.
(Oh that Piper, shes always trying to get a little more attention.)
Once her ANC reaches at least 300 she will have her lumbar aspirate and we will see if those 28 days did the job. Then, hopefully we will be able to take her home for a few days and the Doctors both here and at Egleston will be able to give us a road map or a plan of attack, if you will.
And I will.
I am weary of this phase. "Attack" sounds good. "Attack" also sounds promising. I'm ready to get moving and get attacking and hopefully, prayerfully someday we will look back at this and rejoice we had the strength to put on our fighting gear and give it all we could for our sweet girl.
This strength is not ours but given to us from God...I cannot imagine going through this without the raw ache in my soul being filled with His hope and promise. His goodness is shown in the giggle of Piper at bedtime, in the presence of a Starbucks in the hospital lobby, the sweet smell of my 10 week old nephew sleeping on my chest while we reside in the same room as we did when Piper was first diagnosed at ten weeks old. His goodness did not end when my life began to feel a struggle, in fact it truly began then.
In this struggle I have learned to love, trust and rejoice.
That is a goodness I will never see anywhere else apart from in Gods grip.
Sunday, September 4, 2011
A few things...
All is well here. Piper is just amazing and her strength while going through the amounts of chemo she has endured is simply amazing. She is neutropenic, meaning her immune system is practically non existent. While this is the goal while fighting leukemia it puts her at a severe risk of infections. Thankfully she is still the hardy little Piper we all know and love...blowing kisses to the nurses as she pushes her little stroller around the floor. She has had a surprisingly low amount of side effects and we are so thankful for that. Unfortunately in order to kill the horrible, no good, very bad leukemia cells Piper will first have to be very sick (chemo first, then raditation and then transplant and those effects) before prayerfully she beats this monster.
So far so good.
And now...
Did you know that September is Childhood Cancer Awareness month? I didnt either until September of 2009 when we first heard the words "leukemia" and "Piper" used in the same sentence. Ever since that month I have had a daily reminder that cancer is not only for the adults...it effects children, infants and teens as well.
And here are the ugly facts:
-All child cancers combined receive 3% of the American Cancer Society's research funds.
-In the last 20 years, only 2 drugs were developed for child cancers.
-Each school day, 46 children are diagnosed with cancer
-Each day, 7 children DIE from cancer
-One in 320 children will develop cancer by age 20
-Cancer remains the number one disease killer of children; more than genetic anomalies, cystic fibrosis, and AIDS combined
-Cancer treatment can cause serious side effects that may last a lifetime
-Relapsed Acute Lymphoblastic Leukemia carries a poor prognosis, 10%-50% survival
-Leukemia is the most common form of cancer in children
-Every year since 2003 federal funding for childhood cancer research has been CUT.
While these facts are indeed ugly you know our family is Hopeful. Not only for a Cure but for a Cure within our lifetime. In order to achieve this goal we have to work together. There is an amazing organization here in Atlanta that does just that...and this month in response to our beautiful children in this area who are fighting or once fought, they chose a few faces to honor. And my Piper was chosen this year. It is our goal to raise $1000 to go towards research and hope and a bright future. Anyone who is interested in seeing the amazing fighters and donating money towards such an very good cause in honor of my Piper can find the link here:
http://www.firstgiving.com/fundraiser/piperneedham/2011curekids
And please also check out curechildhoodcancer.org to see more of what CURE is doing for so many children and their families.
As Piper nears her 24th month of chemotherapy I am reminded of the beginning of this journey when two years of treatment seemed so very, very,very far away. Now we begin again with less optimism but a huge dose of Hope and I am still in awe of those who have fought the long fight. Want to have a small glimpse of the hell and heaven that the cancer life brings?
Check out chicagonow.com/mary-tyler-mom
This mom fought with her sweet daughter for almost 3 years and this month in honor of Childhood Cancer Awareness month she is doing a daily post with details of each of the thirty one months her Donna fought. Today is the 4th of September and it is the forth month of Donna's fight. Read and follow it...it is eloquently raw.
Tomorrow I will post more about Piper and life as we now know it. Tonight I am showing you a snippet of what childhood cancer means and how amazing are the fighters and supporters both.
You probably wont be a fighter but you should be a supporter.
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