Welcome to Marlinspike Hall, ancestral home of the Haddock Clan, the creation of Belgian cartoonist Hergé.
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Please excuse this unusually terse entry -- more on that in the next terse post -- but time is of the essence!
[If you don't recall Hannah, click on her bolded, underlined, and capitalized name just below this, my favorite photo of her, called "Hannah's Crane."]
she faced osteosarcoma like a mentally seasoned champion, not a young, untested girly-girl
with her family, she chose a relatively new option for the surgical removal of the tumor in her leg -- rotationplasty
she faced recovery and rehab from the rotationplasty with courage and a grand work ethic
part of the therapy for osteosarcoma, as for most cancers, involved radiation and chemotherapy, and these things, too, she struggled through with beautiful style (as beautiful as one can be whilst throwing up)
just when all seemed well, hannah developed one of the side effects of her chemotherapy -- leukemia (and if that isn't a kick in the stomach, what is?)
as if that were not enough, the osteosarcoma reared its ugly head again, traveling to her lung, and she underwent surgery to remove that cancerous nodule.
she undertook this challenge as she did all the others, in beauty and ferocity
but still, she needed a bone marrow transplant to defeat the leukemia, a truly arduous and scary procedure
now post-transplant, she and her family live with the fear of rejection syndrome and further spread of the osteosarcoma, so every symptom that you or i might consider trivial, they must treat as potentially life-threatening and make a run to the doctor or ER...
and they do all these things with grace, humor, and the requisite NEGU attitude (Never Ever Give Up)
I think you get the gist of it, yes? She is doing well but the struggle is not over, and while she became my hero when I read about her choice of the rotationplasty at the beginning of her journey, I imagine that as she grows, in emotional and physical age, that choice will provide her with some challenges as well as its many benefits. But that's ME talking and projecting my weaknesses onto Hannah. Excuse me!
Her mom posted this request today and I hope as many of my bazillion readers as can will place an order to help them out with the medical bills and the bills of daily living that have had to be pushed aside for two years. Shoot, I will project one of my major pet peeves onto the Smith family: parking fees! Never mind the cost of all the traveling they've had to do for treatment, just think of the darned parking fees at all those hospitals, doctors' offices, and "medical buildings." I may hold a fundraiser for myself one day, just for parking fees...
Oops. Train of thought, off the tracks once again.
Here is Hannah's Mom's message:
12-16-13
1 hour ago
Hannah has designed a T-shirt that is on her favorite color. It is a fundraiser and we need your help. You only have until Thursday to pre-order. $15 each and will be shipped 2 weeks after the end of the last order date. Our goal is 150 shirts but we only have 89 ordered so far. Can you help? Here's the link:
I haven't written in a while about Little Miss Hannah, My Hero. She is someone I think of on mornings like this one, when the whole night was spent in spasm, and Buddy ate one of the cables to the DVR. Of course, normally, I'd comfort myself with music from my well-loaded, super-soothing mp3 player... but Buddy ate the last of my earbuds a few days ago. It's not fair to Fred to then blast music on the CD player on my bedside table... although, right now, I could probably get away with it, because... Well, remember that ear infection Fred had a few months back? It has returned, such that he has completely lost hearing in his left ear and perceives things in a distorted fashion out of his right side. So I figure that blaring Pink Floyd won't endear me -- any more than I am already endeared -- to the belovèd Fredster.
No, I am NOT weeping... that's just the state of my right eyeball!
Yeah, so when things are this fun around here -- and did I mention that Fred the Chef made himself a burger bonanza at about 2 am? And that he doesn't understand the concept of GREASE, or of those lovely little things I purchased that fit nicely over any frying element to prevent GREASE from covering, say, your girl's cute little bright red enamel kettle? The damn thing practically slipped out of my hands when I picked it up to get coffee started. Umm, where was I?
Oh, right!
Hannah has had *real* troubles. Not the kind that go away with a little elbow grease and some electrical tape. Not the kind that can be overcome by the application of bad wit and an even worse attitude.
I know this is weird, but I have admired and loved Hannah since someone first referred me to her CaringBridge site sometime last year. At that time, she had been diagnosed with a pretty straightforward osteosarcoma in her leg. That sounds simple enough, doesn't it -- "she had been diagnosed with a pretty straightforward osteosarcoma in her leg."
Well, for an athletic, sensitive, active, highly intelligent young lady, that had to be devastating. But she soldiered on... and I admit that kind of worried me, as I do know something about the dangers -- the future emotional dangers -- for kids who just soldier on through hard times. I had a somewhat dysfunctional father who harangued into my thick head that I was to take any troubling issue and put it in a box (said box residing inside the aforementioned thick head), and "never, ever open it again."
THAT'S the healthy way of addressing problems! Might that be behind my tendency to sleep for a week when confronted with some badass issue? I know -- get over it! Well, like everyone, it does sometimes feel like I've spent my entire freaking life getting over the emotional dysfunction gifted to me by the Parental-Units... and I'm also highly cognizant of the fact that I am wayyyy past "grown," and responsible for myself and my actions/reactions.
So I still spend time looking for people from whom to learn, for people who seem to have it together, for people whose natural inclinations, good upraising, and excellent natures guide them in the right way. The Tao, I'd have said at one time.
Such is Hannah. She and her family studied the various surgical options for her osteosarcoma -- the one sure thing is that these tumors must come out, and removing tumor from bone almost always involves hugely traumatic, life-changing surgeries, mostly amputations. In recent years, though, another very creative option has gained in popularity, especially for children. It allows them to be fitted, once healing has been accomplished, with state-of-the-art prostheses that permit continued participation in sports, and, really, given the optimism and brilliance of kids -- participation in anything. It is a procedure called a rotationplasty. If you go back and read some of the initial posts on this blog about My Hero Hannah, you'll find better explanations and a video that her mom recommended.
I will be honest. It turned my stomach when I first read about it. I cried. Then I watched that video and others, and thought about the many heroes I met during my brief stint at the Shepherd Center, and the bravery of people who are not willing to cave in to circumstances, who are claiming a normal life, and know to do so at very tender ages. And I straightened up. To rehabilitate my Dad's bad advice mentioned above, he also hammered into my head that I should "straighten up and fly right."
What can I say? The man was a career officer in the United States Air Force.
Ah, but Hannah's road did not get easier, even after the rotationplasty and the process of rehab and fitting prostheses. In one of the saddest twists that I've ever heard of, one of the side effects of the chemotherapy she underwent for the osteosarcoma is... leukemia.
In a double, triple (it's hard to keep count) whammy, she developed leukemia, and they also discovered nodules in her lung that were metastatic cancers from the original tumor in her leg. So brave Hannah now had to defeat cancer again, and ultimately required a bone marrow transplant, which she just recently completed. To be honest, the reason I've not written about her for a while is that, although the initial signs are that the transplant has gone wonderfully and has grafted completely with her immune system... I've been feeling like a jinx.
But I'm over that. It's time to celebrate Hannah; it's time for Hannah to do all her grieving and processing, healing and living. It's time to take that deep, cleansing breath.
So her mom has been very excited about Hannah having been chosen to be featured in this Today Show segment. It got bumped a few times, but finally aired today. She looks beautiful and radiant to me, after having seen nothing but pictures of her during the worst of times. She faces many a challenge, the first being to process all that happened to her with such rapidity, the next being the many daily obstacles requiring adjustments (pieces of cake, I'll wager, though irritating as all get out), and then that future road, of which none of us can ever be sure.
But there is no one better prepared, no one with better support, and no one more heroic.*
*Nota bene: I DESPISE the concept of the "exceptional" sufferer, be it a patient with a physical illness or challenge, be it someone mired in the worst of the universe's circumstances. There is no requirement, that I am aware of, that people must do exceptional things, all the while smiling and encouraging others. I am more comfortable around someone who throws the occasional fit and curses God, figuring, I suppose, that these are the people who really are in relationship with God. So if Hannah were ever to pout, act like a brat, regret what she feels she's missed... that sounds perfectly normal and fine. It's just that she is not going to ever be STUCK there... It's not in her nature. If I've envy, well, that's where it lies.
A note from Hannah's mom was posted on Caringbridge today:
And so we begin the 3rd chapter in kicking Leukemia's tail. Hannah was admitted last night and already had her anti-seizure meds to counteract the chemo. This morning started HEAVY chemo. Her immune system will be killed off over the next 10 days. BMT [bone marrow transplant] infusion will be on the 26th. We are all ready to get this behind us!
It's been a while since I've updated my Dear Readers on Ms. Hannah and her progress.
To briefly skim her story:
Hannah was diagnosed with osteosarcoma that involved an area just below her knee. The standard treatment is chemotherapy, radiation, and amputation. Hannah made the courageous decision to go with another option that is slowly gaining in popularity, despite its seemingly radical nature.
She opted to have a rotationplasty, in which the cancerous area is, indeed, amputated, but the foot is reattached, backward, essentially to the knee. It's much more complicated than that but what it allows is for the later fitting of some awesome prosthetics that permit people to remain very athletic and active.
She had the chemo and radiation. She had the radical surgery. She worked like a true champ in Physical Therapy and was doing very well.
Do you know what one of the side effects of the chemotherapy is? One of the leukemias. And yes, Hannah has developed leukemia. She also was found to have a nodule in her lung that was a spread of the original osteosarcoma.
So she has had to change horses midstream, as they say. She is now undergoing the preparatory chemotherapy to set the stage for a bone marrow transplant -- a European man is a perfect match, "except" for a few compatibility issues in typing. I know, I know... so he's not a perfect match. Near perfect!
At the moment, while her counts are down so low, she's been hit with some viruses, precisely at the time when she has NO immune system with which to fight back. Her Mom is feeling low, too, because she thinks that she is now catching a cold, which means she cannot be a bedside cheerleader until she's well.
So... give a thought to Hannah tonight, and her family, particularly her Mom.
She is one plucky kid, and she is my hero. When I get all slobbery pitiful about missing a shoulder and not being able to move a leg... I think of this girl in her heroic "crane" pose, in her quest to get back on the soccer field, and in the pool, and I read about her doing the very hard PT work without a word of complaint... and am so humbled.
FEBRUARY 7: Please forgive my tardiness in updating you all on how our Hannah is doing. It has definitely been a crazy week since she got her new diagnosis last Wednesday. Hannah is still recovering from lung surgery. As of today they still are NOT going to remove her chest tube. There is a bubble in there and it has to be gone before they can take it out. First prayer is that the bubble goes away and she can get that tube out. It is terribly uncomfortable and painful for her when she moves around. As soon as she is cleared from her surgeon, she will go straight to the 9th floor to begin chemotherapy treatments for her AML (Acute Myeloid Leukemia). She will be in the hospital anywhere from 4-6 weeks straight depending on how fast her numbers go back up after treatment. She cannot leave the hospital until her numbers are cleared...then after a couple of days at home, she will go back in for another round of chemo with the same parameters. After that she will have to have a bone marrow transplant. This is as far as we know for her treatment. Once she's past the transplant, we will see where we are going from there to get her in remission. As for the tumor they took out on Monday, it was confirmed as Osteosarcoma. While we are all disappointed that it recurred so quickly (only 2 months), the good news is they did get all of the tumor and because the margin around the tumor was healthy cells, we know they got all of it. That means, at this point, there are no plans to put her through treatments for Osteosarcoma. We are so grateful for this "silver lining" in our very dark cloud. We are so grateful for all of the prayers and positive thoughts coming our way. Hannah is in wonderful spirits, as always, and is ready to fight this monster called cancer. I will update you when I know more.
APRIL 19: Just had another big informational meeting about Hannah's bone marrow transplant at St. Louis Children's Hospital. We know that Hannah's donor is a man from Europe and that he is a perfect match based on the criteria however there are a few things that could be a potential problem. It's a lot of medical terms so rather than go into a long explanation I'll just say she will have a heightened risk for GVHD (graft vs host disease) as well as CMV. His blood type is A+ and Hannah's is O+ so initially there could be issue despite them taking out the red blood cells. There are also lots of meds she's going to take for prep for the actual transplant. Also they pushed back her transplant date to June 12. Sooo many hurdles yet to jump. Please pray everything goes as planned with no rejection or problems. I feel so overwhelmed with all of this...soooooo overwhelmed! :'(
TONIGHT: Hannah's still feeling rotten. Her ANC is back down to 0, but that's to be expected. These viruses (rotovirus is one of them) are kicking her tail. Still coughing and runny nose. Had to have 2 units of blood today b/c her hemoglobin was WAYYY low. Had platelets yesterday. She's really getting frustrated and down about it all... she told me today "I just want to be done!" Translation: Ive had enough of hospitals and medicine and doctors and all of this. She and I had a bit of a cry together, which I think helped her. Another hurdle for me (I know I never post about myself so please forgive me) is I feel myself getting sick too. If I'm sick, I can't be on the floor, meaning I can't be with Hannah. This is all so overwhelming! I can't be sick! My Hannah needs me! :'(
Uploaded to YouTube by mayoclinic on Sep 3, 2010: "This is a pre-surgical video which describes rotationplasty, who the procedure is appropriate for and possible complications. This video depicts the process of being fitted for a prosthesis and learning to use it. The patient describes her active and satisfying life after rotationplasty, her emotions and the process of adjusting to living with a prosthesis."
No offense to my "cancer kids," but if you all would puh-leeze stop dying and relapsing, I'd appreciate it. Just kidding, young ones, there's a whole host of you who've graduated from "The List of Four" and are now in college, back in fourth grade, on the swim team, and just generally kicking cancer's booty.
Miss Hannah, looking like she might wanna chew glass... but lovely and colorful, as usual!
I want to talk to my Dear Readers about Miss Hannah -- yes, my hero. If you've been following my logical and well laid out presentation of her story, you know that she recently suffered a relapse of osteosarcoma, with spread to her lung. The good news is that a (relatively) simple surgery may have caught it early in the form of a nodule with clean edges. So, that's worth a "yay!" -- just don't scare your co-workers with too loud a scream of joy.
The down side of chemo for osteosarcoma is the "side effect" of leukemia, which Hannah now has, as well. That's worth a scream of another sort, and you probably should wait until you've some privacy before letting loose.
But you know me! I'm not one to wallow in self-pity, oh no! And in this case, since I am not the one battling two cancers at once, why should I? Sorry, I got confused there for a moment, or a decade...
So here is the deal. Be a bone marrow donor, because that's what Hannah is now working toward. It's an arduous process, and she is, of course, taking things zen-like, as they come. But her transplant coordinators and family can't afford the luxury of laying around doing chemotherapy, relaxing in that comfy hospital bed, and chowing down on jello.
Today starts week 2 of this 4-6 week stay. She has 3 more days of chemo (including today) and then we wait for her counts to come back up before they let us go home for a few days.
Today I spoke with the head nurse for Dr B...my other kids were tested to see if they are a match for donating bone marrow to Hannah. We got results...NONE of my other kids are a match for Hannah. The nurse said "they didn't even come CLOSE to being a match". *sigh* Soooo...plan B. They've already started the registry search. Because so many of you have offered to be a bone marrow donor for Hannah, we are in the process of putting together a donor drive. I will let you know when I have details.
Thank you for keeping us uplifted in thoughts and prayers.
From the National Marrow Donor Program, here are some frequently asked questions, with answers!
all previous "Hannah" posts can be found HERE. UPDATE 2/2/2013: From Hannah's Mom:
We had a meeting yesterday with Hannah's oncologist. In addition to the Leukemia, they found a nodule in her right lung. They believe the Osteosarcoma is back. It looks like she now has 2 types of cancer she has to fight. Hannah will have another Thoracotomy Monday morning to remove the nodule. It will be biopsied to confirm it is Osteosarcoma. We are devastated to say the least. Once she has healed from surgery, they will begin chemo for the Leukemia (AML). We have a very long and terribly difficult road ahead of us. Hannah is in very good spirits and is doing quite well under the circumstances. Please continue prayers for all of us.
Hannah, my hero, the little girl who had the rotationplasty last year following discovery of osteosarcoma in her leg, now has leukemia. Her mother just posted this plea, which I pass along to you, as I remind myself that even heroes need loving support:
Worst nightmare confirmed. They found Leukemia in Hannah's biopsy. On our way to St. Louis Children's Hospital now. Pleeeease pray! :'(
In case you've forgotten Hannah's heroism, it comes not so much from being stricken with cancer, that happens... It comes from choosing to treat her particular form with a fairly new and radical surgical option, the rotationplasty. Here's a great video from the Mayo Clinic about the surgery:
Uploaded on Sep 3, 2010 This is a pre-surgical video which describes rotationplasty, who the procedure is appropriate for and possible complications. This video depicts the process of being fitted for a prosthesis and learning to use it. The patient describes her active and satisfying life after rotationplasty, her emotions and the process of adjusting to living with a prosthesis.
Here is my favorite photo of Ms. Hannah, My Hero, as The Crane:
There shouldn't be profanity there where Ms. Hannah is... but you'll excuse me this:
DAMN CANCER.
addendum: some fast reading and reminding allow me to share that the only thing that heralded the development of the leukemia was a sudden bad rash over her upper body, for which they went to the logical healer, the dermatologist. it was his biopsy that led to this second cancer diagnosis. apparently, one of the curses of chemotherapy for osteosarcoma is that it puts the patient at risk for... leukemia. now that is one sucky, sucky side effect.
