The last day of the waiting: Prayers for Amy's surgery

Then {Folly Beach, 2009; Before her world came crashing down}
Ribs dip down
into the cavern of your abdomen
I trace blue veins like roadmaps under skin
peaches and cream
in the incandescent light
of the lamp at 1 a.m.

my eyes feel electric
red rimmed
for the tears were spent a week ago
and now everything is raw
the finger that traces
the soul that won't rest
the mind that races
the lips that can barely murmur prayer

surgical soap stinks 
and it stings
i think i'll take you to the hotel pool first
and we'll swim away from fear
into the night shadows
and dreams of a summer set free

i chase away thoughts
of carrying you into surgery
with it's smells of chemicals and gas
the smiles of macabre on the gasman
trying to put mom at ease
some are just butchers and thieves
dressed up in thousand dollar suits
after they wash off the blood sweat burnt flesh

i pray his name - japanese -
that he cradles your neck like i do
like it's fine china to be carved before firing
that he's an artist or magician
maybe even kind
that there's another Artist there
who touches you with healing
and sets us all free from nightmares

Tomorrow, we head to "Mother Mayo" in Rochester in the pre-dawn to meet with Amelia's cancer team, and, later that afternoon, the surgical team that will perform the surgery to remove three suspicious lymph nodes from the right side of her neck on Friday morning. At least that is the plan. (Plans have ways of changing.) This week, Amy has developed a head cold, and Aaron and I are nervous about the surgery because she had a head cold going into her tonsillectomy in 2009, directly after which she developed her brain infection and became our quirky "special needs" daughter forever. We now know that her brain infection and the problems that followed were vaccine related and that the infection was probably already brewing when the tonsillectomy was performed, but the head cold still makes us nervous. Amy has not had a vaccine since, on the advice of her medical team, who diagnosed her with a rare immune disorder that causes extreme vaccine reactions.

Heading into tomorrow's appointments and Friday's surgery, we have several pressing praying requests. Some of them may seem a little odd, as prayer requests often are when you're looking at a potential cancer diagnosis. Over the years Aaron and I spent as pediatric nurses, we witnessed some very frightening things, and we are concerned about how to avoid them with our own daughter. We'll lay them out for you here.

  • Once you pursue traditional medical care, or "enroll" your child in that system by seeking care at a major health center like Mayo, you may be forfeiting your parental rights to make certain choices about withdrawing your child from treatment there. For instance, if you mention wanting to seek a second opinion, potentially delaying treatment, child protective services may be called, and a judge can temporarily place a hold on your parental rights and place your child under the care of the state for medical decisions so that cancer treatment can commence immediately. We are unsure we want to go ahead with chemo and more surgery immediately following the first surgery, so it will be important that we choose our words wisely and that the person we speak to is compassionate about our wishes.
  • New medical students, residents and interns typically start their rotations in July. Thanks to my "ins" in the medical community, I found out that Mayo's new group comes off central orientation July 16. This means that any surgeries performed prior to July 16 will be with surgical residents and interns with 1-2 years of operating experience, and any surgeries performed after July 16 will be with residents and interns with 0-1 years experience. This means that we need to get information quickly and get surgeries done in a timely manner, or wait a little while (into August maybe?) until the new doctors get their feet wet to avoid unnecessary complications with Amy's surgeries, which will be much more extensive if she needs more than the simple one on her neck this Friday.
  • If - and this is a very long-term "if" - Amy has lymphoma, and doesn't respond well to the primary treatment using surgery and chemo, we are very much on the fence about pursuing a bone marrow transplant for her. We did not save umbilical cord stem cells for any of our children. One of her siblings or cousins may be a close match for her, and in that case, we might choose to give it one shot. But otherwise, we would probably choose to stop treatment at that point. We watched too many children suffer a very horrible death to go through an anonymous donor transplant that is a poor match for Amelia. Again, getting the medical community to cooperate with stopping treatment would be quite a hurdle to get over. And having the strength to stick with our decision would be one of the hardest things we would ever face as parents and as a married couple. This is just something to keep in your prayers if you are a long-term thinker.

Now {Folly Beach, 2012; A photo to celebrate healing, I thought}
Amy has several possible roads out of surgery on Friday. If you wouldn't mind praying for each of these, I've listed them in the order we're praying for ourselves. We're really praying hard for the most benign results. It would be miraculous and marvelous in every way if we could just come home Friday evening and resume normal life as if none of this had ever happened (with the exception of the spiritual growth God provides in leaps and bounds whenever a spiritual crisis of this magnitude presents itself).
  1. Amy comes through surgery with flying colors, tolerates anesthesia well (she has had horrible trouble coming out of anesthesia in the past) and is able to come home to Wisconsin Friday night. The initial in-surgery biopsy of the lymph nodes shows nothing unusual, and final biopsy results show idiopathic (unexplained) lymphadenopathy (swollen lymph nodes). Life goes on as usual at the Thul house!
  2. Amy comes through surgery great, tolerates anesthesia well, and is able to come home Friday night. Initial in-surgery biopsy reveals infected lymph nodes and they are able to identify the infection either right away or with longer cultures in the next 3-5 days. Home (oral) treatment is possible and successful and life goes on as usual at the Thul house!
  3. As above, but hospital (IV) treatment is required for infection. No complications, the infection is contained, doesn't spread to her brain or other important organs, provision for finances to stay in Rochester for the necessary time period, and we come home within a week and then life goes on!
  4. As above, but initial biopsy is inconclusive. We get to bring Amy home Friday night! Biopsy over the next week shows cancer. We have time to prepare Amy and the other kids, as well as our own hearts. We are not in hospital lock-down at Mayo and we can pursue a second opinion at another major medical center as well as research other therapies. Amy begins treatment in early August.
  5. As above, but initial biopsy shows cancer. May the Lord protect and provide for Amelia and all of us as we go through the scariness right in the moment with all of the kids including Amy. If this scenario plays out, she may have another surgery early next week to implant a device to allow her to start chemo, as well as a surgery to remove the other affected lymph nodes and any other spots of cancer that might show up on PET scans or MRIs that would be done. She would stay in the hospital for at least one week to initiate treatment and then come home to receive weekly or biweekly treatment at the cancer center in Eau Claire. These last two would obviously require big adjustments for our entire family!
This week, Amy's lump seems to be staying about the same. It is pretty hard, but still easy to move around, which makes Aaron and I feel better about it. Then again, mine was easy to move around, too. Darn past experience!! Makes it hard to have hope and stay positive. Amy makes it easy, though. She is brave, matter of fact, and nonchalant about the whole process. We've described the surgery over and over to her, but her short-term memory isn't the best so she seems to forget a lot of the details (probably better that way, in my opinion). She accepts that it needs to happen and thinks it's funny that she might have "cansah" just like Mama, asked me if I would lose my hair with her, and said, "Well, it's a good thing I like hats!" with her characteristic chuckle and shrug of the shoulders. She is a sweetheart and an example to us all as she determines in her mind to be braver with each blood draw, each physical exam, each surgery, each procedure. She always describes how she acted the last time and pinpoints one behavior she's going to work on, and then eliminates that. She is a hard worker and is already setting her mind to improving her character through this whole experience. I wish I had the same self-control and will-power this little dynamo of a five-year-old has! I should take a video of her, so you could all see what I'm talking about. Vlog tomorrow, perhaps?!

Thanks for lifting us up in your prayers. They mean so much to us as we walk forward into the unknown. The uncertainty is certainly hardest on Aaron and I, and probably the grandparents, aunties and uncles, and dearest friends who are walking through this trial at our sides. We all love Amelia so intensely, and have faced almost losing her before, which makes us even more tenacious about our love for her little person. Katy is pretty broody, too, and I think tomorrow will be a difficult day for us all. I need to get going and pack our bags as well as some fun activities for the waiting room and hospital rooms on Friday and possibly beyond. How do you pack for 1 day or 7? Cancer or not? 

Please post this blog button all over the internet and rally prayer for my daughter as we face the coming weeks.


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