Friday, November 30, 2012
Thursday, November 29, 2012
She knows what she wants, how she wants it, when she wants it and she isn't afraid to fight to get it. She is a tough little lady and I am thankful God gave her that extra "fight" because she sure has needed it.
She can do everything she could before. Yesterday I tried to help her do something, she loudly said "NO!" and then pushed me away and then she just did it. Well, if that didn't make me stop and think. Not only CAN she do it herself she WANTS to do it herself. There is no pity party with her. She's just going to do it.
Before her surgery I dreaded the times I would have to watch her struggle to try and figure out how to do things with only one hand. But now, honestly, I cannot wait to see what she is going to do next. I am so proud when she figures each new thing out. I would like to say she is proud of herself too, but I don't even think she knows she is doing it different than 2 weeks ago. I don't think she realizes her "loss" because she is too focused on just doing what she always did.
Rejoice in hope, be patient in tribulation, be constant in prayer. Romans 12:12
Wednesday, November 28, 2012
Just got home from Madison, D slept all the way home. Man is that girl glad to be home. I am thinking she is about done with these trips ;)
Now time for me to get to work.
We are still waiting on the results of the most important test, the one confirming that no cancer cells remain. Hopefully we will get those results tomorrow and hopefully it is all clear!!! That would make for one fantastic Thanksgiving!!
I had to work today, the kids were at school, everything was "normal". Normal as in craziness, LOUD, messes being made, fits being thrown by each kid (and maybe even me, I don't remember). I asked Owen if he had a megaphone in his belly, because everything that came out of his mouth today was extremely louder than it needed to be.
Delainey is still doing well, it's amazing to watch her. She slept great last night (again taking up most of our bed). However, her nap taking needs some improvement, she is tired but fights it, yesterday and today she finally crashed about 4:30, which means she is up later, but that's when daddy can get his snuggle time in, so it works out okay.
She had a bath this morning and loved it, it was her first one since Thursday morning. I am sure that felt great. She has been very happy today and playing like crazy, she even wrestled with daddy a little bit.
We know we still have a long road ahead with PT/OT, surgical re-checks, oncology appointments for life, prosthetic appointments for life, scans every 3-6 months for life, etc. and we know we will have some hard days, more painful days for her, but for now we are very thankful for how she has felt so far. We will take every good day we can get.
My mom took home a bunch of D's shirts to make the left sleeve openings a little wider to get her arm in easier. Once we get that done we should be all set.
Thanks for all the continued prayers.
Home again, home again, jiggety jig. D is so happy to be home. She's a rock star! She is already getting on and off of the couch by herself. She is truly amazing!! Praying for another good night. God is so amazing!
Praying for a restful night of sleep tonight. Good night all!
She is still playing in the play room, hoping to have surgery start at 4:30 or so. A couple surgeries before hers took longer which of course pushes everything back. I'll keep you all posted.
She's is in surgery now, started about 10m ago (4:30ish) Should be 6:30-7 when she's done. 8 ish when she's in recovery. Thanks for the prayers.
Our baby girl is cancer free! Praying that it never comes back! Still waiting to see her and kiss her up.
In our recovery room, she is resting. She looks beautiful.
Since we made our "decision" there has been peace in this household. We haven't had any doctor appointments for a week now and we don't have any until the surgery in 3 and a half weeks. Our life seems like it's back to "normal".
Delainey is not "sick", she doesn't act sick, look sick, etc. So there are moments where I forget about all that is going on. I love those moments, however brief they may be.
Well off to bed finally! No school tomorrow!
I know I have said this a few hundred times (and that still is not enough!) but the Hayden family is truly blessed. We receive cards and messages every day and I am saddened that I cannot reply to each one. But please know we do read each and every one. Each one touches our hearts and we treasure them. I am saving all the cards and I have saved every email and Facebook comment and I will be printing them all to make a journal of this journey for Delainey to read in the future. We want her to know how many people loved her and prayed for her, many who have never even met her (or us, for that matter!) God Bless you all!
We chatted about our options again, and discussed pros/cons of everything. As far as the amputation would go, it would be below the elbow and he would save as much of her forearm as possible. The more of it she can keep the better. They use skin from the top side of her forearm to cover the remaining arm. The surgery time would be about 2 hours and recovery time is surprisingly short. He said if she is feeling good, her pain is under control and there were no complication she could possibly go home the in 1-2 days. Which was a relief to hear, the initial 3-7 days was a daunting thought to me…how do you keep a 17 month old entertained for 7 straight days in a small room where she can’t touch “anything”.
I also spoke with our radiologist this afternoon for a while and she said she had reached out to a few more colleagues throughout the country to gather their thoughts on this. (In the words of the surgeon, this is a triple rarity: sarcomas compared to other cancers are rare, they are rare in the arm and they are especially rare in children) So with the opinions of 6 other radiologists and oncologists gathered we are still down to our 2 options. We are confident we have gathered as much information about this as we can. This is OUR BABY, you better believe we are getting all the info and all the opinions of the “right” people before making a decision of this magnitude.
All that being said, we have chosen to amputate. Not to sound too clinical but this is the best choice for her long term survival. We have a few main reasons why we chose this, one being it immediately eliminates the chance of recurrence in her arm and eliminates the risk of a second cancer from the radiation-both of which are very possible. As far as the “cancer” aspect of this the only thing that remains is a risk of it showing up in another part of her body. But we are eliminating 2 of 3 chances for a cancer to come back; which immediately gives her a better chance of a longer life. We also know that, as adults, we both would’ve wanted our parents to choose this option for us, had they needed to make that decision. She will have the surgery and hopefully after a few weeks her little life will be normal again. I wish it would be that easy for Adam and I, but we are her parents’ and it is our job to hold her fear/pain for her.
I am sad that she will never wear a wedding ring on her left hand, but I just want her to be here long enough to get married. I don’t care if that ring is in her ear, her nose or her toes. I am sad when I look at her effortlessly paging through books and think of how much different that will be in a few short weeks, but I just want her here. We are sad at the loss of her arm, but the bottom line is WE WANT HER HERE. Whether this buys her 100 days, 10 years or 70; this is what we need to do to keep her healthy long term and to keep her here for as long as possible.
Through all this we are very grateful for many things. We are truly grateful that this is all happening without her “knowing” better. We are grateful that Adam and I agree on her course of treatment and we do not need to “convince” the other that our way if the right way. We are grateful this tumor was on her arm, in a spot that was very visible for us to see right away and take care of it. We are very grateful that this has brought literally thousands of people “together” to pray. We have heard from many friends and family that “I have (10, 20, 30…135) people from this (city, state, country) praying for your little girl”. To us that is purely and simply AMAZING. We have had people who are self-proclaimed as “not big pray-ers” taking the time out of their day to not only pray for our little girl but email me and say “I am praying for you and your family”. We are grateful for the amazing doctors and nurses we have had the pleasure of dealing with throughout this. They not only are taking care of our little girl but we can see genuine care and concern for her and us. We are very grateful for our family and friends, we knew we were blessed before but it is very humbling to have so many wonderful people in our lives who love us and support us so much.
Delainey’s surgery is scheduled for Monday Nov 19th at 2pm. That is the Monday of Thanksgiving week. We, of course, would’ve preferred to not do it that day, as it is Adam’s mom’s birthday and the week of Thanksgiving, but if they have any cancellations the week before we may be able to move it up a little bit. But it is also fitting that on Thanksgiving we can say that (for the time being) our baby is finally cancer free!
I would again like to thank you all for your continued prayers. I would also like to tell you all that we are at peace; we are at peace because we know this is best, God has led us here. We have bad days and good days, we have bad minutes and good minutes. Do I sometimes feel like crying at Walmart, or Starbucks or Church?!?!? YES!! (then I just pinch myself really hard so I deflect the pain, (who needs people looking at you like a crazy person because you just busted out crying in the toilet paper aisle?) weird I know but it works). We are at peace.
The 3 options we have are 1) do nothing, wait and see, 2) radiation of the forearm, or 3) amputation.
The wait and see is not a recommended option for her, since they were not able to get all the cancer cells out through surgery, because of the location and her tiny arm. Doing nothing would almost guarantee another growth in that spot or elsewhere on her body.
Radiation: This is the option we went into the meeting with as our most likely choice. Most of it we already knew, but some things we didn’t know and some we hadn’t really thought about yet. Once we got more details about it we changed our thinking slightly. The radiation would be M-F for 7 weeks. She would need to be put to sleep for it each day. The treatment itself would be about 10 minutes but with the sedation/recovery etc it would take about 2+ hours each day and she would also see the radiologist and oncologist 3-4 times a week on top of the radiation.
Immediate effects of the radiation are tiredness and her arm would slowly develop a “sunburn” type look to it throughout the treatment involving blistering, redness, pain, etc. Over time that would heal but one of the long term effects is permanent skin discoloration, it could look tanned or leathered, but it will definitely not look like her other arm. I was thinking the radiation would just affect the skin on the inside of her forearm where the surgery was, but it will affect her entire forearm.
The other longer term effects are that it will stop the growth of the forearm and it will slow the growth of her hand. So the size her arm is now will be the size her arm will be for the rest of her life. After radiation there will be a lot of scar tissue in her arm and her arm will feel hard and almost “wood” like on the inside vs the soft and supple way your arm should feel. There will be reduced function in her hand after radiation and over time because of the scar tissue her muscles will not work as well and her hand function could be diminished even more. Radiation can also cause a secondary cancer to show up. Her sarcoma could also come back there or in another part of her body as well. There is no guarantee. Obviously, radiation greatly reduces the chance of her sarcoma coming back in her arm, because it kills those cancer cells. But if it did come back in her forearm, amputation would need to be done at that point, and by that time it would need to be amputated above the elbow, because the radiation would have affected her arm up to her elbow. The amputation after radiation might need to be done at 3 years old, 8 or 15 we just wouldn’t know and we need to keep that in mind when making this decision.
Amputation: This was a scary thought to us a few weeks ago, but after hearing about the radiation, this option doesn’t really seem any scarier than that. If we chose amputation first, it would most likely be below the elbow, thus saving her elbow joint and allowing for a little better movement and use of her arm, it would also allow for a better prosthetic because we wouldn’t need one with that joint. She would be in the hospital for 3-7 days and healing at home would be a few days of “laying low” but otherwise she will basically be good to go. Amputation obviously eliminates the chance of the sarcoma coming back in the same spot, because we removed the spot, thus giving us better odds of no-recurrence. It could still show up in some other spot at some point, 3 months, 4 years or 10 years later. We still have some questions we need answers to such as, extent of pain of the arm that is left and for how long, is phantom pain as much of an issue for children as in adults, etc. We are waiting on a call back form the surgeon to address those concerns.
Either way she will be having scans done every 3-6 months for the next 2-3 years and then every 6 months for the next few years and then yearly after that for the rest of her life.
We have not made a decision yet, we have calls into a few other “experts” to get a couple answers to some things. We need to decide within the next week or so.
If we went with radiation we would begin the process in 2 weeks, have an initial set up appointment and then the actual treatment would begin about a week and a half later and go for 7 weeks.
If we choose amputation there is no “immediate” rush but it would also need to be done in the next 4 weeks or so to have the best results.
We have a lot going through our minds, such as what if this were me or Adam and if we would’ve had this as a kid what would we have wanted our parents to do for us. We both said we would’ve wanted the amputation. We wouldn’t have wanted to go through life with an underdeveloped, pretty much useless hand, only to then possibly need it amputated at 8 years or 15 years old. We both thought that would be a traumatic event we wouldn’t have wanted to have been put through. If we choose radiation we are putting her through all that and then still possibly needing to amputate. If we choose amputation and do it now she will have the best healing, the least amount of traumatic feelings, etc. She would have just grown up this way. We are leaning a little more towards amputation at this point but we are still thinking on it and praying on it.
I look at my little girl and think about how she has changed my life, how she brings a smile to my face EVERY single day, how my world would be so different had she not been in it. She is tough, she is resilient and she will fight her way through anything. She is a beautiful little lady and we just want her to be with us as long as possible and we will ultimately do whatever the doctors feel is her best chance of living a long full life. We will not let her use her impairment, in either case, as an opportunity to quit, or to have people do things for her. We will use this as a teaching tool for her and the other kids about compassion, perseverance, finding a way to make her dreams happen and to find a way to get what we want in life no matter how hard. I feel in my heart, this little lady is going to teach our family more things than I could ever imagine. We love her more than we could ever say and we are very blessed that God gave her to us.
Thank you for all your prayers and we ask that you continue them for God’s guidance in this decision.
Then Thursday we head back again to meet with the oncologist and radiologist to discuss treatment options. We are praying that we will have a plan after Thursday, but there is SO much to think about and consider before deciding. We are prayerful and asking God to guide us in this decision.
Other than that not much else new to report.
Thanks for all your prayers, well wishes, and acts of kindness you have all shown our little family!