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."

Kate's MRI [with update]

Holly McRae's daughter Kate has an MRI scheduled for Tuesday.  Tomorrow.

Kate has what her mother once described as a "very malignant, aggressive brain tumor called a supratentorial primitive neuroectodermal tumor or sPNET."   She's undergone every treatment available.  Her parents and doctors have culled through protocols, and they know they are navigating uncharted waters now that there are new tumor spots.

Still, first grade is just around the corner, and life goes on adding sweet to the bitter.

Theirs is a Christ-centered home and family -- Holly's husband, Aaron, is a pastor and she is clearly faith-driven.  They believe that God can and will cure their daughter.

Every MRI has become critically important, sometimes for all that the scan does not show as much as for what it illuminates.  Holly and Aaron have always been wonderfully explicit in their requests for prayers -- a characteristic of real believers.  (I've been advised many times that God can handle my own pitiful minutiae --from disintegrating thumbnails to an overflowing appreciation for the awesome GirlPower of the FIFA World Cup finalists...)

I've learned that God is tapping me on the shoulder every time one of these real believer types stands in my path and refuses to get out of the way.  (They're incorrigible.)  I would translate that annoying tap::tap::tap into words but this is a G-rated blog, so just imagine God mildly cursing.  I don't mean plagues in Old Testament Egypt or Eve's subjugation, although I suspect that while God has authored a good many such curses, there is no intent to stifle the human response to fight, argue, and revolt.  Indeed, sometimes the divine hand fans those flames. 

Oh, hush.  Yes, I had another "D'oh" moment and didn't delete it. 

Here is the beginning of Holly McRae's latest journal entry over at Caring Bridge.  If you are new to Kate's story, you'll find the two years of journaling insightful, challenging, and -- definitely -- inspiring.  You will pray for Kate, her parents, her brother Will and her sister Olivia;  You will come to care, and very much.

In the post prior to this one, Holly wrote:

We have many prayer requests. Many. So tonight I will name a few pressing ones.
~that the original tumor area on the MRI will show NO change (this is hugely important)
~that the two new tumors would be gone on the upcoming MRI
~that Kate's abdominal pain would subside as she has been barely eating
~that her energy would increase in the next few weeks, so she would be able to start first grade
~that God would miraculously touch Kate's body, eradicate the cancer, heal the damaged areas of her brain, protect her vital structures that are at risk and preserve her vivacious spirit.

Whether you are a seasoned Prayer Warrior, or, like me, a clueless recruit in Intercessionary Boot Camp, that should keep you busy.

MRI on Tuesday....


We always tend to get reflective right before a major MRI. I clean and do my usual organizing. I wonder if it comes from the fact that the day Kate was initially diagnosed I left things in chaos at home. Bowls of cereal half eaten, laundry everywhere, we just dropped everything to go for the CT scan. I didn't step foot in our house again for almost 2 months. Now I always feel the impending desire to have everything in order, just in case we wouldn't come home. I truly don't believe that will be the case, but wonder if experience has dictated these new instincts in me.


The other day we were driving somewhere, it was probably 130 degrees out (slight exaggeration, but only slight) and the kids were giggling about something in the back. I quietly asked Aaron if he could imagine life without the impending thoughts of cancer, without the constant thought if Kate would be with us the following year, without death being a very real and talked about topic. Some are healthy changes. Healthy changes amidst a very gruesome disease. And yet we are still mourning other life changes. Bittersweet. Only occasionally do I let myself even wonder what life would have been like. What sweet Kate's life would be like had cancer never come knocking. I can't let myself stay there. It did happen, and life is different. It will always be different now. I just pray different will become sweeter over the days ahead. Less of the bitter, more of the sweet.


Kate's hair is starting to grow back some. It's interesting so far. Darker in spots. Thicker in others. We still can't tell if it will all come back yet. I get nervous for her some days. The thought of potentially having some permanent hair loss at the tender age of 7. It would be just one more battle to face. I love however that Kate rarely cares, of course she is sure her hair will come back at some point. And of course there is the occasional day that someone stares too long, or turns around to take a second glance, causing her to rethink letting others see beneath her hat. And then of course the fierce mother instinct comes out and my eyes say a million words to them that my mouth cannot. And yet, the other day she offhandedly said she wants to work on being more brave. Where she can take off her hat more readily in public around people she doesn't know. And I tell her she is incredibly brave already. She is forgiving of peoples unashamed stares and rarely complains about not having hair, when most are never thankful for the simple fact that they do have hair. I love that she has a new found confidence in the face of a physically altering illness. That speaks volumes. She is crazy beautiful anyways. [READ THE REST HERE]

That's for sure.

TUESDAY UPDATE:  Holly writes (and Aaron tweets) --

"We have very few details at this time but simply heard there has been 'no change' since last scan! Everything is stable! We praise God for this and are incredibly thankful for every single prayer offered on Kate's behalf."



Pray and Fast for Kate on Monday, February 7

Kate Mcrae's PET scan is scheduled for Tuesday, February 8.  This brave seven-year-old has a rare and aggressive form of brain cancer that has returned despite surgery, chemotherapy, and radiation.

In her journal on CaringBridge, Kate's mom Holly has shared how hard this time is, how many decisions need to be made, and how they continue to pray for a miracle.

We have been contacting various healthcare specialists around the country researching potential options, as Kate's healthcare team does the same. If things would proceed in an undesirable direction, we will need to be making rather informed, but quick decisions. We continue to cry out for healing for our baby. It would be nothing short of miraculous for the PET scan to come back not indicating cancer. We are boldly praying for that.

Kate's father Aaron has asked for those who are willing and able to join them tomorrow in a day of prayer and fasting.  As always, this faithful couple has imbued their prayer with specifics, something that has always delighted me and been a real help when storming heaven on behalf of Kate.  I'm pretty sure God finds my efforts much improved when the Mcrae's needs keep them focussed and appropriate.  Aaron writes --

Here are a few requests for those who will partner with us:


For Healing… for Kate’s complete healing from top of her head to her toes
Psalm 107: 19 Then they cried to the LORD in their trouble, and he saved them from their distress. 20 He sent forth his word and healed them; he rescued them from the grave.


For Wisdom… for Holly and I, for the doctors, and people we consult with
Colossians 1:9 For this reason, since the day we heard about you, we have not stopped praying for you and asking God to fill you with the knowledge of his will through all spiritual wisdom and understanding.


For Jesus to be Glorified… for Christ to be seen as POWERFUL & to be praised
John 11:4 Jesus said, ‘This sickness will not end in death. No, it is for God’s glory, so that, God’s Son may be glorified through it.’

Again, I want to thank the countless people who have prayed and encouraged us for some time. We would be honored if some of you could join us in this day of seeking God in prayer and fasting. Please pass this along and ask others. If you need some guidance in fasting, I have found this site to be helpful:  Awake21 particularly the ‘Prayer, Fasting, and Personal Devotion Guide.’

I really appreciate Aaron and Holly continuing to minister in the middle of their pain and hurry -- I appreciate them telling us exactly what we can do, providing resources, providing scriptural references. I am not exactly fertile ground for much of this, but I always hope for a time when sarcasm and an ironic world view will ease. Until then, I'll just do the best I can. If you, too, are uncomfortable and inexperienced with prayer and fasting born from beliefs so fierce and necessarily literal, join me tomorrow and let's try to shed our smart-assed ways.

Being dumb before God can't be anything too new.

All we gotta do is remember Holly and Aaron, and their children Olivia, Will, and most especially, Kate.

Will, Aaron, Holly, Kate, Olivia

From The TomKat Studio