I often use this blog to either express humor or emotion and Melissa's Caring Bridge site generally shares the day-to-day, less emotional and matter-of-fact facts about what is going on with Harper.
But today, I want to just share a bit more detail on what Harper is currently going through, so people have an appreciation of her experience. Some of this may duplicate things I've shared before, on different posts at different times, but I'm trying to put it all in one spot.
Harper is undergoing what is called a Tandem Autologous Stem Cell Transplant. That's a long name, I know - but it basically means that she is getting 2 stem cell transplants, both times receiving her own stem cells. The decision was made to do a "tandem" transplant in order to be as aggressive as we can be against her particularly aggressive cancer (as it showed signs of getting even MORE aggressive based on the most recent pathology).
In July 2013 Harper underwent a stem cell "harvest." A temporary central line was placed, in her neck. She was given high doses of Neupogen to stimulate her bone marrow to produce "extra" stem cells which were then present in her circulating blood. Her blood was then taken out through the temporary central line, filtered through a centrifuge, the stem cells (and some platelets) removed, and then the blood was returned to her through the same temporary central line. All in all they collected enough stem cells for her to go through transplant 7 or 8 times. Since harvest, her stem cells have been sitting in cold storage awaiting the time they are needed.
In order to do a stem cell transplant, the body has to be "conditioned." This works out to mean that high dose chemotherapy (or radiation - or potentially both, I suppose) must be administered to kill off the existing bone marrow. The drugs used can be some of the same drugs that are used in "regular" chemotherapy, or different. In Harper's case, the first set of drugs included both types. She first received thiotepa (which she had never gotten) and then received cyclophosphamide (which she had received previously). The thiotepa is generally reserved (especially in the doses used for Harper) for transplant situations because the drug completely kills the bone marrow. If you didn't administer stem cells, the patient's bone marrow would take a long time to recover, if it recovered at all.
The thiotepa is only produced in Italy and is incredibly expensive. It also has a pretty harsh set of side effects. The drug "burns" healthy tissue and is eliminated from the body through excretions like sweat and tears. This is important because if the excretion containing the drug sits on the skin (or any tissue) is can cause significant burning. In order to protect from this, they administer water baths multiple times per day. Still, they can't protect her completely, and so after receiving this drug Harper has burns over a lot of her body, especially in areas where she has skin folds, like under her arm or between her legs. She also has some on her face where tears or saliva would have been when she cried or drooled in her sleep.
The burns from the thiotepa extend to more than just her skin, but also are present where any secretion might be - including her mouth, throat and the entirety of her gastrointestinal tract. This manifests in mucositis - or sores in her mouth, throat and GI tract. The pain from this is pretty excruciating, requiring strong opioid pain medication given through a Patient Controlled Analgesia (PCA) pump. Just like after surgery, she is receiving constant pain meds with the option to "hit the button" when the pain is not controlled. (Harper doesn't like pain meds and resists pushing the button - so we have to do it for her, especially when she is moaning in her sleep)
Once the bone marrow has been killed off, and the chemo has a chance to start leaving her system, then the stem cells are infused. It's a pretty simple process. They are thawed and then administered directly into her blood stream through her Central Line. The only real "issue" is the preservative used when freezing them - DMSO - can cause a reaction, so they monitor her very closely after administration. The DMSO is them excreted through her breath - filling her room with the distinct aroma of creamed corn for several days.
Once the stem cells are in her body - we just wait. The stem cells are supposed to find their way into her bones and begin to repopulate her bone marrow. In the mean time blood cells that are produced by the bone marrow are then in short supply. These include red blood cells, white blood cells and platelets. The red blood cells and platelets can be supplemented through transfusions, but the white blood cells cannot. So, while we wait, Harper essentially has no immune system. Until her white counts recover, she is not allowed to leave her room, visitors are pretty strongly discouraged, and the nurses and doctors use precautions like gowns and sometimes masks (depending on the situation) to protect Harper from anything they might have or might have picked up while caring for another patient or patient's family.
The pain associated with the mucositis also prevents eating and swallowing. In preparation, the day after her stem cell infusion, but before the mucositis really set in, they inserted an NJ tube (naso-jejunal). This tube goes through her nose, down her throat, through her stomach and into her small intestines. This allows her to receive nutrition and oral medications without having to swallow. It also reduces the likelihood of vomiting from these oral meds and food (though it doesn't eliminate the vomiting completely. Harper hates it, didn't want it put in, and had to be completely sedated in order to have it inserted.
Once the stem cells "graft" (the term used for repopulating the bone marrow) her counts will slowly rebound as the bone marrow grows. Her counts will see-saw for awhile, going up, then down again. Once she reaches an ANC of 500 consistently (several day) and assuming no other complications she will be allowed to go home, with severe limitations on what she can do, where she can go and who she can see. She will be seen daily at the hospital for weeks to monitor her recovery.
For most stem cell transplants, the recovery would go from there. However, because of the tandem, after a few weeks at home (we're hoping will overlap with Christmas so she can home for the holiday) she will be re-admitted to the hospital and the entire process will happen again. The second time they will use a different set of drugs, but they will come with their own complications, will kill of the newly grown bone marrow, and we will have to wait for the second infusions of stem cells to repopulate and rebuild in order for her to finally come home to stay.
All of this is intended to give her the BEST chance of eliminating ALL the cancer cells in her body. It is excruciating, and it is so very hard to separate the family for such an extended time, but it gives her best chance at long-term survival.
If you made it all the way through to this point, you hopefully have a better appreciation for what Harper is experiencing and what the next few months hold. If all goes smoothly, Harper will be home and recovering by February.
Friday, October 31, 2014
Sunday, October 26, 2014
PSA
Melissa wrote an incredibly powerful Public Service Announcement a few days ago that you can find here.
I'm not sure I have the energy to write anything quite as thought provoking or raw and honest tonight. So, I will take a different tact. My thoughts are meant in no way to be in conflict with or undermining of Melissa's comments, but instead are in jest; a coping mechanism if you will indulge me.
A Public Service Announcement - To My Children
The Laundry Fairy is currently on sabbatical with an undetermined return date. Until such time as The Laundry Fairy is able to return to her duties, a substitute fairy will be standing in.
Please be aware that the following may occur:
1. The laundry may pile up - While the substitute fairy will try his hardest to keep up, there may be occasions that laundry may not be finished as quickly as you are accustomed. This may mean you may be required to wear more than your favorite three shirts and 2 pairs of socks.
2. The laundry may not be folded neatly - The substitute fairy has not had the level of practice nor has been blessed with the magical ability to fold clothing in the neat, clean and straight lines as you have experienced with The Laundry Fairy. As such, your clothes may not fit in your drawers quite as well. You may even have to resort to refolding your clothing when the substitute fairy has folded them in a manner not to your liking.
3. Putting the clothes away - The substitute fairy is working multiple jobs while The Laundry Fairy is away, so you may be asked to put your own clothes away in your drawers. While we understand this is an incredible inconvenience, they are, after all, your clothes. See related item #2 above.
4. Bleach - Owing to inexperience your whites may not be quite as bright or, alternatively, may smell like bleach, depending on if the substitute fairy has used too much or too little bleach. In light of these expected errors, we ask that you try not to spill as much stuff on your white clothing and, in alignment with our longstanding policy on the subject, we remind you that your shirt is not a napkin.
The above is not an all inclusive list of potential inconveniences, but represents the issue we expect to experience first. As other issues are identified, you will be alerted, likely by being told you will have to do something yourself or that your perfect outfit may have to be altered.
Also, please be aware that The Dishes Fairy, The Cleaning Fairy and The Taxi Fairy have accompanied The Laundry Fairy, and as such substitutes for these fairies are also being sought. We expect that substitutes for these fairies will also pose challenges and you may be asked (read instructed) to do things you are unaccustomed to. Our best advice to help you get through this difficult time is - get over it.
Thank you,
Fairy Management
I'm not sure I have the energy to write anything quite as thought provoking or raw and honest tonight. So, I will take a different tact. My thoughts are meant in no way to be in conflict with or undermining of Melissa's comments, but instead are in jest; a coping mechanism if you will indulge me.
A Public Service Announcement - To My Children
The Laundry Fairy is currently on sabbatical with an undetermined return date. Until such time as The Laundry Fairy is able to return to her duties, a substitute fairy will be standing in.
Please be aware that the following may occur:
1. The laundry may pile up - While the substitute fairy will try his hardest to keep up, there may be occasions that laundry may not be finished as quickly as you are accustomed. This may mean you may be required to wear more than your favorite three shirts and 2 pairs of socks.
2. The laundry may not be folded neatly - The substitute fairy has not had the level of practice nor has been blessed with the magical ability to fold clothing in the neat, clean and straight lines as you have experienced with The Laundry Fairy. As such, your clothes may not fit in your drawers quite as well. You may even have to resort to refolding your clothing when the substitute fairy has folded them in a manner not to your liking.
3. Putting the clothes away - The substitute fairy is working multiple jobs while The Laundry Fairy is away, so you may be asked to put your own clothes away in your drawers. While we understand this is an incredible inconvenience, they are, after all, your clothes. See related item #2 above.
4. Bleach - Owing to inexperience your whites may not be quite as bright or, alternatively, may smell like bleach, depending on if the substitute fairy has used too much or too little bleach. In light of these expected errors, we ask that you try not to spill as much stuff on your white clothing and, in alignment with our longstanding policy on the subject, we remind you that your shirt is not a napkin.
The above is not an all inclusive list of potential inconveniences, but represents the issue we expect to experience first. As other issues are identified, you will be alerted, likely by being told you will have to do something yourself or that your perfect outfit may have to be altered.
Also, please be aware that The Dishes Fairy, The Cleaning Fairy and The Taxi Fairy have accompanied The Laundry Fairy, and as such substitutes for these fairies are also being sought. We expect that substitutes for these fairies will also pose challenges and you may be asked (read instructed) to do things you are unaccustomed to. Our best advice to help you get through this difficult time is - get over it.
Thank you,
Fairy Management
Thursday, October 23, 2014
A Chink in the Armor
This has been a long week. A very long week. Much longer than I had realized or allowed myself to acknowledge.
My emotional armor is well polished, fits well and is comfortable. My sword, hardened steel, sharpened by months of honing, cuts down adversarial thoughts before they can get near me. My helmet, gleaming in the sunlight, repels even the harshest blows. I am well protected against the expected enemies of fear, despair and worry. You might think, to look upon me, that nothing can penetrate. Nothing could get to me.
But even the most glorious warrior has an inevitable weakness. Icarus got too close to the sun. Achilles had his infamous heel. Sampson had his sensitive hair.
Me? My weakness is unexpected, unexplained and incredible kindness.
With Cadence at her 4H archery practice, Fin and I were getting ready to read a book when the doorbell rang. Fin called out that she didn't know who it was, so I went to shoo away the likely political candidate's rep.
What I found was a very nicely dressed young couple, who somehow knew my name. And they knew about Harper. She told me she works for a local jewelry store, and someone had come into her store today, and told her the story of our brave little girl.
She also knew it was a special day, and she wanted to give Harper a gift. A very nice bracelet. I accepted it graciously, and thanked her so much for her generosity. (I've gotten good at the art of a smooth acceptance of generosity) The couple shook my hand, and departed, taking up no more of my time.
I walked back inside, still fully protected in my armor. Not a chink had shown. And then I read the card. I hope that the giver does not mind that I share her words:
Happy "Birthday" Harper!
Until today, I did not know who you were, but now I am touched by your story. It's no surprise that words about remarkable people travel far. Beautiful people don't just happen, they are created with immeasurable grace. Congratulations on how far and how much success you've achieved. May you keep being brave and above all believe.
I wish you and your beautiful family all the love and laughter in life.
God Bless You Harper!
-V
My armor fell from me as if it had melted. My sword vaporized. My helmet hit the ground and shattered. And I wept uncontrollably.
Someone I've never met felt so compelled by the mere story of Harper to seek us out and give her a beautiful card and generous gift. She showed love and kindness to someone whom she did not know. And with that gesture, she breached all my defenses, and truly humbled me.
I work hard to put on an air of confidence and strength. It takes an incredible amount of effort to keep up appearances, and I am drained. It is important, I believe, for Harper and her sisters to have normalcy preserved (as much as we can) and my armor is useful. At work, the armor allows me escape as well.
But occasionally, as occurred tonight, the armor fails in its duties - a chink is found - and the enormity of this life, this situation, this family under attack is realized.
Thank you to everyone who has been so supportive and generous to us through this prolonged and renewed crisis. Maybe you only saw my armor. Maybe the protection has held. Maybe that day I had more strength and maintained the barrier. Maybe you knew the weakness and chose not to expose it.
But it is there, and perhaps the armor is not as thick as it appears. Maybe the sword is heavier than I let on as I wield it. Maybe the helmet does not offer the protection you'd guess based on its shine.
Maybe, just maybe, there is a chink in the armor.
My emotional armor is well polished, fits well and is comfortable. My sword, hardened steel, sharpened by months of honing, cuts down adversarial thoughts before they can get near me. My helmet, gleaming in the sunlight, repels even the harshest blows. I am well protected against the expected enemies of fear, despair and worry. You might think, to look upon me, that nothing can penetrate. Nothing could get to me.
But even the most glorious warrior has an inevitable weakness. Icarus got too close to the sun. Achilles had his infamous heel. Sampson had his sensitive hair.
Me? My weakness is unexpected, unexplained and incredible kindness.
With Cadence at her 4H archery practice, Fin and I were getting ready to read a book when the doorbell rang. Fin called out that she didn't know who it was, so I went to shoo away the likely political candidate's rep.
What I found was a very nicely dressed young couple, who somehow knew my name. And they knew about Harper. She told me she works for a local jewelry store, and someone had come into her store today, and told her the story of our brave little girl.
She also knew it was a special day, and she wanted to give Harper a gift. A very nice bracelet. I accepted it graciously, and thanked her so much for her generosity. (I've gotten good at the art of a smooth acceptance of generosity) The couple shook my hand, and departed, taking up no more of my time.
I walked back inside, still fully protected in my armor. Not a chink had shown. And then I read the card. I hope that the giver does not mind that I share her words:
Happy "Birthday" Harper!
Until today, I did not know who you were, but now I am touched by your story. It's no surprise that words about remarkable people travel far. Beautiful people don't just happen, they are created with immeasurable grace. Congratulations on how far and how much success you've achieved. May you keep being brave and above all believe.
I wish you and your beautiful family all the love and laughter in life.
God Bless You Harper!
-V
My armor fell from me as if it had melted. My sword vaporized. My helmet hit the ground and shattered. And I wept uncontrollably.
Someone I've never met felt so compelled by the mere story of Harper to seek us out and give her a beautiful card and generous gift. She showed love and kindness to someone whom she did not know. And with that gesture, she breached all my defenses, and truly humbled me.
I work hard to put on an air of confidence and strength. It takes an incredible amount of effort to keep up appearances, and I am drained. It is important, I believe, for Harper and her sisters to have normalcy preserved (as much as we can) and my armor is useful. At work, the armor allows me escape as well.
But occasionally, as occurred tonight, the armor fails in its duties - a chink is found - and the enormity of this life, this situation, this family under attack is realized.
Thank you to everyone who has been so supportive and generous to us through this prolonged and renewed crisis. Maybe you only saw my armor. Maybe the protection has held. Maybe that day I had more strength and maintained the barrier. Maybe you knew the weakness and chose not to expose it.
But it is there, and perhaps the armor is not as thick as it appears. Maybe the sword is heavier than I let on as I wield it. Maybe the helmet does not offer the protection you'd guess based on its shine.
Maybe, just maybe, there is a chink in the armor.
Happy Birthday Harper
Today is a big day. Today is Harper's Birthday.
Of course many people are probably currently scratching their heads. "Wait a minute. I thought Harper was born in June. How could today, October 23rd, be her birthday?"
Well, anyone contemplating that conundrum - rest easy. Your recollection would be right. Harper did, in fact, enter this world and join us in June of 2005. However, being born in June doesn't preclude today being her birthday as well. It sounds a bit like a Lewis Carroll situation, where perhaps Harper is pulling an Alice, and romping around in Wonderland, chasing a white rabbit.
The significance of today does not, however, hing upon smoking caterpillars, vanishing grinning cats, guillotine-obsessed queens with a fetish for hearts, or mad men dressed in velvet top-hats. Today's significance hinges on a short 60 minute infusion.
Today, after a week of bone marrow killing chemotherapy, Harper's now dying immune system is being rescued and "reborn" - receiving an infusion of her own stem cells. This is a day we began planning for the day she was diagnosed, and we hoped and prayed this day would never come. And here it is.
And while the actual experience of getting a 60 minute infusion is nothing in comparison to the months of chemo and weeks of radiation, it is in fact, a major milestone. After everything Harper has endured, with strength and grace that defies her physical young age, today is her rebirth. She is once again entering this world anew, the same person, but changed.
Most kids would likely drool over the possibility of two birthdays. Two days of celebrating. Two days of gifts, showering of affection. Two days of cake, ice cream, or whatever they desire. But the price is high, and not something I would willingly offer to anyone who had a choice.
But, we put aside the sad circumstances that has led to this day. We ignore the discomfort and often excruciating physical and emotional pain for both Harper and us as we have endured the past 17 months. We raise our heads from the downward and defeated gaze we would otherwise assume if we would just give in to it all.
And we say - Happy Birthday Harper. May God bless us with many, many more of them. And if it means buying cake, balloons, and presents multiple times a year to celebrate the great gift of this precious little girl, I'm in.
PS - If all goes as planned, Harper will end up with THREE birthdays (due to a tandem transplant plan which will mean she will do this all again in a few weeks). That will mean three days a year of celebrating. And it will be all that much sweeter.
Of course many people are probably currently scratching their heads. "Wait a minute. I thought Harper was born in June. How could today, October 23rd, be her birthday?"
Well, anyone contemplating that conundrum - rest easy. Your recollection would be right. Harper did, in fact, enter this world and join us in June of 2005. However, being born in June doesn't preclude today being her birthday as well. It sounds a bit like a Lewis Carroll situation, where perhaps Harper is pulling an Alice, and romping around in Wonderland, chasing a white rabbit.
The significance of today does not, however, hing upon smoking caterpillars, vanishing grinning cats, guillotine-obsessed queens with a fetish for hearts, or mad men dressed in velvet top-hats. Today's significance hinges on a short 60 minute infusion.
Today, after a week of bone marrow killing chemotherapy, Harper's now dying immune system is being rescued and "reborn" - receiving an infusion of her own stem cells. This is a day we began planning for the day she was diagnosed, and we hoped and prayed this day would never come. And here it is.
And while the actual experience of getting a 60 minute infusion is nothing in comparison to the months of chemo and weeks of radiation, it is in fact, a major milestone. After everything Harper has endured, with strength and grace that defies her physical young age, today is her rebirth. She is once again entering this world anew, the same person, but changed.
Most kids would likely drool over the possibility of two birthdays. Two days of celebrating. Two days of gifts, showering of affection. Two days of cake, ice cream, or whatever they desire. But the price is high, and not something I would willingly offer to anyone who had a choice.
But, we put aside the sad circumstances that has led to this day. We ignore the discomfort and often excruciating physical and emotional pain for both Harper and us as we have endured the past 17 months. We raise our heads from the downward and defeated gaze we would otherwise assume if we would just give in to it all.
And we say - Happy Birthday Harper. May God bless us with many, many more of them. And if it means buying cake, balloons, and presents multiple times a year to celebrate the great gift of this precious little girl, I'm in.
PS - If all goes as planned, Harper will end up with THREE birthdays (due to a tandem transplant plan which will mean she will do this all again in a few weeks). That will mean three days a year of celebrating. And it will be all that much sweeter.
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