Tuesday, May 7, 2013

Update on Hannah

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.

From Caringbridge:

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."

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