Thursday, November 29, 2012

Thursday November 29th, 2012

So it has been 2 weeks since Delainey's surgery and our life is certainly in full swing again, but this little girl...WOW...she amazes me every day...EVERY DAY!

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

Stout lends a hand to family during trying time

Stout lends a hand to family during trying time

Tuesday November 27th, 2012

Just got a call from D's other doc confirming that all her margins were clear. They also ran tests on her arm and her tumor had grown back. He said we made the right choice. Scary to think that it had grown back already and glad we did what we did before it spread. She will never be "out of the woods" but really, none of us are safe from cancer. Thankfully she will be scanned every 3-6 months and they will catch it fast if it were ever to come back in a different spot.

Monday November 26th, 2012

Delainey's re-casting is almost done. She picked purple for her color. Most importantly her pathology results were in and the resident said the margins were all clear! Which means...they got it all!!!!!!! Very thankful and praising God this morning. We will meet with the doctor after the procedure to talk about the results more with him. Thanks for all the prayers!!

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.

Sunday November 25th, 2012

Back in Madison for an early morning cast change. Entertaining babies in hotel rooms is not an easy job.

Tuesday November 20th, 2012

So we will be heading back down to Madison on Monday to get Delainey's new cast put on. The one she has on now was put on while her arm was swollen so they need to wait for the swelling to go down and then put a new one on. They will need to have her be asleep for this procedure because she would not sit still enough for it. So it will most likely be another long day.

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!!

Monday November 19th, 2012

Today has been a crazy day. Back to real life I guess.

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.


Sunday November 18th, 2012

So our first night home went well. Delainey slept good and was pain free all night. Although I does a tiny 18 month old take up so much of my queen sized bed that I am literally hanging off the edge????

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 wrest
led 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.


Saturday November 17th, 2012

Heading home in a few short minutes. D slept through the night. I woke up to her sweet face saying "hi! Hi!" To me, she gave me Multiple kisses. She saw grandma sleeping, raised her finger to her mouth and said "shhh!"

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!

Whew! What a day! This is one tired momma. We were out of the hospital by 10am, home by 12:30 and has been nothing but a whirlwind since! Delainey is crawling up onto and off of furniture, she is using her feet and mouth to help her when necessary. I am amazed at how fast she is doing these things, and she is doing them without frustration, she's just doing it. AMAZING!!! She was so excited to be home this afternoon and see everyone and play with everything that she wouldn't take a much needed nap, so I loaded the kids up and we drove around, she was asleep within 2 minutes and slept for a good hour and half as we "explored". She is on pain meds/anti-imflamatory meds, 2 she gets every 4 hours and 1 is every 6, so we will need to wake her up at 10, 2 and 6 am to make sure she keeps up on them. At least for the first 4-5 days they said after that it will be more as needed and not to strict. We are very glad to be home. The kids are doing great with her. I told her tonight she was brave, so now she is saying brave, brave, brave. Yes you are my sweet girl.
Praying for a restful night of sleep tonight. Good night all!

Friday November 16th, 2012

D had a pretty good night, only cried when they wanted blood pressure, etc. They put a nerve block in the end of her arm as well as by her armpit. This got rid of any feeling in her arm. This will be wearing off soon, typically lasts about 12 hours. Adam and I were able to get some sleep. We shall see what this day brings. Praying for peace in her heart as she will most likely be able to tell some...
thing is not right with her arm. Praying the pain meds keep her body at peace as well. As I lay here snuggling her I am getting a chance to read most of the FB posts, messages and emails and I am reminded how God has blessed our family. We are surrounded by love, faith and hope. Jeremiah 29:11 has become our family verse since all this happened and it brings me peace. "For I know the plans I have for you. Plans to prosper you and not harm you. Plans to give you hope and a future."
Today has gone well. We know God is listening to all the prayers being said for our sweetie. She has been in the play room, smiled, laughed, and ate and drank pretty well. Snuggling with my baby girl as we speak. She has napped very well this afternoon I was able to doze a little too, us moms never really "sleep" ;) Pastor Jeff from our church was with us most of the afternoon yesterday and until she was in recovery last night, what a blessing to have him here. My dad and brother, Jake headed up North this morning. Adam just headed back to Sparta a little while ago. And then there were three. Glad to have my mom here with me. Hopefully, we can go home tomorrow but it could be Sun/Mon, just depends on her pain. We are doing fine though. We are blessed to have such amazing kids. Now if only Starbucks delivered...

Thursday November 15th, 2012

We got to Madison about 12:15, so we got my parents checked into their hotel room. Oh a whim I called to make sure we still needed to be there at 1:30. She said they are a little behind so we could come at 2:30 instead, then we wouldn't have to sit in the little room for an hour waiting. She still can't eat or drink, so more prayers for "satisfaction" would be great. We are running up and down the halls of the hotel and taking many elevator rides. Glad we are waiting here instead of there.

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.

Wednesday November 14th, 2012

I just talked to the hospital and Delainey is scheduled for surgery at 3 pm tomorrow. So we need to be in Madison by 1:30. Prayers for keeping her satisfied from 9am until surgery will be greatly appreciated.

Monday November 12th, 2012

I am in AWE! This is the first mold we did and Joan just texted me these. The pictures are beautiful, I am sure these are amazing in person. I am so glad we did this. Thanks Justin Howard for the idea!!

Monday November 12th, 2012

We went to UW-Stout tonight because their GRACIOUS Art Department, Professor Su Hunt and Dean of Students (and family friend) Joan Thomas got together to make a mold and life-cast Delainey's arm. Hopefully, it will turn out good! We are very blessed!

Thursday November 8th, 2012

We got a call from the hospital today, Good news: Delainey's surgery has been moved up to next Thursday Nov 15th. This was the date we had wanted from the beginning but it was full at the time. Now I do not need to worry about payroll while we are down there like I would have had to the following week. (God really listened to me on that prayer!!). The not so good news: is that her surgeon will not be doing her surgery. He fell and tore his rotator cuff and just had surgery so he cannot operate for quite a while, BUT he picked the surgeon for her and he will be in the operating room with her the whole time. We are happy that she was able to be moved up, it gives us 4 less days to think about it. Thanks for all the prayers!!

Wednesday November 7th, 2012

THANK YOU to all the wonderful ladies who came to support Delainey last night, either in person or in spirit. Our family is truly blessed to have friends like you and blessed to have this little girl in our lives. Thank you Schauf's for all you do!

Monday November 5th, 2012

2 Corinthians 4:17-18, "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." (NIV)

Wednesday October 31st, 2012

I received this from my great aunt Nita...
ASAP (means Always Say a Prayer)
God our Father, if it is your will, walk through my house and take away all my worries and illnesses and please watch over and heal my family, in Jesus name. Amen.

Tuesday October 30th, 2012

Spent 30 minutes talking with a prosthetist from Shriners in the Twin Cities and I am very impressed. What a pleasent guy to talk with, very compassionate and informative. I love when people talk to you like a real person, give you the facts but do it in a way that makes you feel like they love your child (whom they never even met.)

Thursday October 25th, 2012

I started putting together Delainey's journal last night and I worked on it more tonight. As I am reading through my posts on FB I am realizing what a rollercoaster the last 3 months have been. Good News---Bad News---Different News---Okay News---Better Than Nothing News---UGH! Didn't think we were Going to Hear That! News---Good News--- Bad News---etc, etc, etc!

Since we made our "decision" ther
e 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!

Sunday October 21st, 2012

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!

Thursday October 18th, 2012

We met with the surgeon today and talked over our surgical options with him. Overall, the conversation went well. There wasn’t anything “new” or unexpected in what we were thinking or hoping for.

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 poss
ible. 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.

Wednesday October 17th, 2012

We are headed to Madison again, very early tomorrow morning. We have an 8:30 appt with the surgeons, to have further discussions regarding Delainey's surgical options. Praying I fall asleep faster than "my normal" otherwise it'll only be a few hours of sleep for me tonight. Thanks to my brother and SIL for having Owen over for a sleepover (hope you don't go into labor before we get back!), and thanks to my bestie and her hubby for taking Max and Cal tonight. Love you all!

Friday October 12th, 2012

So we had our meeting yesterday with the oncologist and radiologist to discuss treatment options for Delainey. There was a lot talked about and between Adam, my parents and I, I think we got it all.

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.

Monday October 8th, 2012

Tomorrow we head to Madison for Delainey's surgery re-check and HOPEFULLY to get that cast removed. She has been such a trooper.
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!

Sunday September 30th, 2012

We heard back from Delainey's doctor on Friday night. The margins around her tumor were positive. Which means they found some cancer cells in the area they took out that was surrounding the tumor. At this point I do not know if it was one cancer cell or a thousand, or if it was right next to the tumor or farther out in the margin. But it basically tells us that the barrier around the tumor wasn’t strong enough to hold all the cancer cells in.

Delainey’s oncologist presented her case to the tumor board on Wednesday, where Delainey’s radiologist and many other experts were in attendance. Usually they come up with a unanimous or at least a majority decision of what treatment should be per case or at least what they recommend. However, since sarcomas themselves are rare and even more rare in children (like one in a million-literally) there is not cut and dry treatment protocol (but many opinions!)

Since sarcomas “generally” do not come back in the same spot, they usually re-appear in the lungs or blood, some docs felt it would be best to radiate, to kill off any cancer cells left behind to hopefully prevent them from getting into her blood and going to her lungs.

On the other hand, some docs felt that withholding radiation at this time might be a better choice. In their opinion: since sarcomas “generally” do not come back in the same spot, radiating that area will likely not do much good and that it will not guarantee that it doesn’t come back there or anywhere else. And that the effects of the radiation on Delainey is not worth that chance and since it would be right over her wrist there is a great chance that her growth plates will be damaged and her hand and/or wrist might stop growing altogether.


Our oncologist is working on setting up an appointment with D’s surgeon, D’s radiologist and herself so we can all meet and discuss options, pros, cons, risks, etc. I am sure it will be a lengthy meeting. At this point we need to gather all the information we can & then pray for guidance. Ultimately it comes down to what Adam and I feel is best for our baby girl. We go back on Tuesday the 9th for her surgery re-check. Hopefully, she will be healing fine and her cast can come off & she can get back to being a little more “normal” (take a bath without a bread bag on her arm, play in the sandbox, etc.)

At this time Delainey is doing great. She is not letting her cast slow her down. She has needed very little pain meds and is almost always smiling and laughing. She has started talking more and more now and it is so fun to ‘converse’ with her. Her brothers and sisters love her very much and are great at ‘tending’ to her, they are very concerned for her and it melts my heart when they do things for her. However, we also live in the real world and Delainey gets mad (mad at her cast, mad she can’t grab things fully, mad she can’t be outside in the sandbox) and the kids get cranky and tired of me saying “be careful of her hand” and “look out for Lainey”. They also fight with each other and get on each other nerves, as well as mine and Adams. But this is why we thoroughly enjoy the sweet moments and those are the ones we will treasure.

Adam and I go from stressed and ornery to feeling blessed and thankful. This sort of thing certainly takes a toll on your heart, your mind, your energy, your attitude, your family, your marriage, your work, your housekeeping, your kids, and all other aspects of your life. We are trying to find that balance of what our new normal will be. We were able to have a fun weekend celebrating Max’s 7th birthday! All the kids enjoyed all the cake and ice cream!

We have taken a positive attitude towards this battle we are fighting, we are praying, we are giving it to God and we will do whatever it takes to get this monster out of our babe. Given all that, we do still have bad days. Once our house is put back together and all the tools of the remodel are put away, I think we will breathe slightly easier. But there will always be “something” I am sure.

We are blessed with great family and friends and a Great God. We CAN do this! We love you all!

Thursday September 27th, 2012

Delainey is doing well. You'd never know she just had major surgery! She has slept good the last two nights. She has adapted very well to her arm in a cast from her fingers to her shoulder. Let me tell you it doesn't slow her down!

She's supposed to keep her cast clean and dry, real realistic for a 16 month old. But I am cutting up small pairs up tights to cover up her cast. Keeps the cast clean and we can wash them when needed and they are fun patterns!

Owen and Calleigh came home from Grandma Hayden's last night. What a sight! All four of them were so excited to see each other. What a sweet moment! Delainey couldn't stop giving hugs and kisses to everyone! Her recheck is in two weeks then we can make the appointment to discuss radiation and any other treatment. It will probably be a 3-4 hour meeting. We have a lot of decisions to make.

But for now we are just going about our day to day. For the most part we are okay. We can still smile and enjoy our family, our little girl and our life. It is not easy, there are moments with tears, there are days with tears, but we are strong and faithful so we will get through it. I cannot say enough how blessed we are! Our families are amazing, our friends are wonderful, the doctors and nurses are simply perfect and God is GREAT!

Thank you all for your prayers, we would love it if you could continue them. God Bless!

Monday September 24th, 2012

Reading to roll to the hospital. Thank you for all the prayers for our baby girl!


Our baby girl is still back in surgery. No news yet, so hopefully it is going as planned. She should be done between 9:30/10. Thanks again for all the prayers.

Her surgery was done at 9:30, we are just waiting for her to wake up. Just talked to the doc and all went well and went as he expected. I will write a more detailed update a little later once she is settled in recovery. Max has been very brave and helpful today.
D is sleeping in my arms.
The surgery went well. The arteries and 2 main nerves were NOT in the tumor, so that is great news. That means that her blood supply to her hand was not affected and she should still have feeling/sensation in her hand.
There were tendons that were involved in the tumor that had to be removed, which can/will cause loss of function in parts of her hand. We won't know how much until she starts using it again. But we did see her fingers move so that's good. The tumor wedged itself along and between her two arm bones so they had to remove the membrane on the bone. Which could cause the bones to fuse together but it's another "time will tell" thing. Radiation is still a likely option at this point. Most likely we will go home tomorrow. Then we will begin planning the next step.
Thanks for all the prayers!
Adam, Max and grandpa are headed back to Sparta. So it's a girls night at the hospital ;) hopefully grandma and I can get "some" sleep. Otherwise maybe I will earn an early bedtime tomorrow night. Hope to be discharged tomorrow-midmorning


Monday September 17th, 2012

We just met with the surgeon for Delainey's consult.

First off the surgery has been switched to Monday. The doctor has to fly out on Friday, so he didn't want to do the surgery and then be out of town for three days.

We went over more of what to expect, some things we liked some we didn't. But ultimately we have to do what needs to be done.

After reviewing her scans etc again, the chance of radiation is looking more likely. Since it is such a small area they most likely cannot get it all, they just don't have any room to take out "extra" to ensure getting it all because there is simply not enough space in her tiny wrist. If the tumor was in her leg or someplace bigger they could take out extra muscle etc surrounding it but that's not the case here.

There is a small chance amputation below the elbow could be in her future, if it were to grow back in the same spot or if they get into the surgery and it has entwined itself into the arteries etc of her wrist.

She might lose some function of her left hand, again depends on how it is. Depending on what function would be lost, other surgeries could be in her future.

Many "what ifs" were talked about but it really comes down to not knowing until they get in there and see what's all involved.

Not the GREAT news we received last week but it could be worse. So please keep the prayers coming! Our little girl is a fighter, and our faith is strong so we know she'll be okay!

Tuesday September 11th, 2012

We had a very long day in Madison today, but we are home now. We got there about 9:30 and they put the numbing cream on Delainey's arm, then the IV went in and the Radioactive dye went in. That had to be in for 3 hours before the bone scan. So finally at 2:30 they put her to sleep and my baby was off for a bone scan and CT scan of her chest and abdomen.

She wasn't gone long and she was waking up and NOT HAPPY, she was groggy and hungry as her last food was at 7:30 this morning. All in all she did very well.

We left Madison about 4:15 and got home about 6. As we were pulling into town the doctor called with the scan results and they were ALL CLEAR!!! The cancer has not spread! We are overjoyed and celebrating tonight!!!

We have an appointment on Monday to meet with the surgeon again, so we can chat and he can look at her arm (by that time it'll be one month since her biopsy and it has grown since then). We have her surgery scheduled for next Thursday the 20th. We will head down to Madison Wednesday night and will be there at least until Friday but could be as long Sunday. After that we will have follow up appointments to make sure it is gone. We will not know until then if Radiation is needed. But we will take this win!

God is so good! You all cannot even begin to imagine how thankful we are for this news. We are not out of the woods yet, but it looks like D's long road has been shortened greatly!

Again THANK YOU all for you prayers. There is no way we could've gotten through this last month and a half without your prayers, your thoughts, your help, your friendships, and your love!

Monday September 10th, 2012

So we FINALLY got THE call from the doctor tonight with the last pathology report. Delainey has Synovial Cell Sarcoma. Believe it or not I have yet to look it up, but from what the doctor is TYPICALLY not an aggressive type of cancer. AMEN! It TYPICALLY only requires REMOVAL! Which means, it normally does not spread, it is normally just the bump that is there and that is it.

Sarcomas themselves are "rare" in comparison to the other types and especially rare in children. So there is not a ton of literature/research in peds cases like you might find in other cancers.

BUT the TYPICAL treatment protocol in most of these cases is surgery only to removal the tumor.

I know I have a lot of capitalized TYPICALs and TYPICALLYs because that is what the doc kept saying. There's stil no guarantee that chemo and radiation are completely out of the picture yet. BUT the odds are in our favor that MY BABY will not need them.

We will know more after her scans come back late afternoon/early evening tomorrow. But we are very hopeful and will be praying that the scans are clear.

At this point we are celebrating the good news that we have, and are praying for more good news tomorrow. We will keep everyone updated as this goes on.

We are very blessed with an amazing support system, amazing children and an especially amazing baby girl who has taught me more in her short 16 months than I ever would've imagined. I see God when I look at her face. Every laugh, smile, hug, or slobbery kiss that she gives, I see God. I see what amazing things He creates, protects, loves and heals. We are honored that God chose us to be her parents.

Thank you all for your prayers, we would be honored if you would continue those for our girl.

Wednesday September 5th, 2012

I am truly blessed! A dear friend of mine (who is also Celiac/Gluten Free) and her family made me (and delivered from Chaseburg) a bunch of homemade gluten free meals and quick breakfasts! So many offered to make meals for us, which is GREAT for Adam and the kids, but I would not be able to eat them because of Celiac's, but she took care of this momma! Thank you Stephanie, you are a wonderful mom, woman and friend! I am so glad you are a part of my life!

Many people have been asking if we have any more news... Not yet. We are still waiting on the last pathology report from her biopsy. We are basically waiting for cells to grow (or not grow, In some cases) to see how her cancer is or isn't growing. We will hopefully hear something tomorrow or Friday. Her Bone scan and CT scan are scheduled for Tuesday. We have quickly learned this is a waiting game. Everything takes time and needs to happen in a certain order to get the proper diagnosis and treatment. Thank you all for the many prayers, kind words and acts of thoughtfulness! We are so humbled by your compassion and generosity.

Aug 29-Sep 3 2012

We took a MUCH needed family vacation to Duluth MN with Grandma and Grandpa Bowe. Delainey LOVED the beach, the rocks, the ships, the sand, the horses, swimming…EVERYTHING!

Tuesday August 28th, 2012

We met with a whole gaggle of doctors this morning. Lots of information to process. Delainey's incision is healing perfectly. So that is great.

All the pathology reports came back but one. The important one, of course. It is one the state lab does where they clone the cells and see if/how they grow. We should have that one back by the end of the week, this is the one that will allow for a definitive diagnosis. We do know for sure that it is malignant, after last weeks appointment there was a sliver of a chance it was benign. We met with the pediatric oncologist who we will be working with. The next step will be a bone scan and CT scan to make sure the cancer has not spread. This will need to be done before any treatment can begin. We will get that done hopefully Wed/Thurs next week. By then all the pathology reports will be back and from the scans we will set the official treatment plan. The doctor spoke a little to the ins and outs of the treatments. Radiation is typically a 5 day a week thing for 5 weeks (+/-), D would need to be asleep for each of these applications. If chemo is the way they go it would be one application every 3 weeks with blood draws in between (which could be done locally). This would obviously be the easier of the two to handle as far as the disruption of our family life. Most likely surgery will also be needed at some point. We are all feeling more at peace today then even last night. Thank you all for the continued prayers! My heart is feeling happier now that I know I don't have to go home and tell the kids that we need to cancel our trip to Duluth. We will certainly need a distraction from all the waiting and all the noise of a remodel at our house.

Monday August 27th, 2012

My stomach is in knots...trying to stay busy and not think about it until its time. But tomorrow is going to change our world. Praying for my Baby D, Praying for the best possible outcome, Praying for the cancer that needs the least amount of treatment, Praying for me to be strong, praying praying praying.

Thursday August 23rd, 2012

We have had many friends and family email and call asking if it is okay to put Delainey on a prayer list at their church---YES!! Please do! We would love it if she was on them all! Thanks!

Tuesday August 21st, 2012

Delainey's biopsy went good, she is recovering nicely and we are on our way home. We did get some hard news, the biopsy looked malignant which matched what the doctor thought after seeing the MRI results. We were as prepared for this news as we could be, however actually hearing the words is something else.

We will be heading back to Madison on Tuesday to go over the biopsy results and get a confirmation on what type this is and make a treatment plan. We are doing as well as can be expected. We most certainly do not like to hear the words chemotherapy and radiation, but if they will heal our daughter we will shout it from the rooftops.

My sister in law April sent me a picture that said "we must choose hope over fear". And that is exactly what we plan to do.

Please continue to keep us in your prayers, this will be a struggle for our family, we need to take care of Delainey while keeping our life as normal as possible for the other 3. But we have a wonderful support system of family and friends and with God we will get through this.

Saturday August 18th, 2012

Baby D came up to me and hugged my leg this afternoon and looked at me sweetly, I looked at her and asked "you're going to be okay, right?" She dropped her blanket and raised up her arms. I picked her up she laid her head on my shoulder, hugged me and patted my back. I am praying she knows something I don't.

Friday August 17th, 2012

We are on the way home from Madison. We met with the pediatric orthopedic oncologist/surgeon. After reviewing the MRI he ordered a chest X-ray and blood work to make sure there was not an underlying medical condition.

Those both came back good, so the chance of it being something like Leukemia are very slim. It also shows that whatever this is it is not in her blood or her lungs, which is also good.

However, based on how sudden it showed up, how fast it is growing and the MRI the chance of it being some sort of cancer is pretty good, there is a very outside chance it is a benign lump but that possibility is still there.

It is pressing up against the two bones in her arm so that plays a factor in everything as well, they don't want it moving to much stuff which could cause developmental problems in her arm/hand.


We will be heading back down to Madison Monday night for an early morning biopsy on Tuesday. That will take anywhere from 3-7 days to get a firm diagnosis. After that we will know if it is cancerous, and how to proceed.

Please keep the prayers coming for my little girl. We are taking this one step at a time and going from there. I'm pretty sure our life is about to get turned upside down. Luckily she's a feisty little peanut who fights for what she wants. The doctor and the PA made us feel very comfortable and I have a feeling we will get to know them very well over the next few months.

Thursday August 16th, 2012

We met with the ortho surgeon this afternoon and went over Delainey's MRI results. The "mass" had grown in size from last Thursday's ultrasound to Tuesday's MRI. This doctor feels it is out of the scope of his expertise, so he is referring us to a Doc at UW Madison. That doc wanted us there soon so he can evaluate her, we will be heading there tomorrow for an 11:30 appointment.

At this point we are just going for an evaluation, although surgery will happen I do not believe it will be tomorrow. It is looking like it would be next week.

The doc we are seeing is the best for the surgery and we feel confident that we are in good hands with him. Ultimately, we are leaving it all in God's hands because that’s all we can do. We will not know if it is cancerous or not until it comes out.

We will take all the prayers we can get, so please keep them coming. Thank you to all those who have been sending emails, messages and texts, they truly do mean a lot. I am sorry if I don't respond to them all, we are still trying to wrap our heads around all of this and still carry on our regularly busy life with 4 kids. I will post updates on here tomorrow when we know, it seems to be the best way to fill everyone in without multiple texts, phone calls etc.

On the way home from picking up the boys from my moms’ today I told Max what we found out and I said we have to keep praying so God will take care of our little girl, he said "oh I am mom, all day I have been just stopping what I am doing and saying a prayer, I will keep doing that." Brought tears to my eyes. We are truly blessed.

Tuesday August 14th, 2012

MRI done. Now for our appointment on Thursday with the ped surgeon and the hand surgeon to go over results of MRI and make a plan.


Friday August 10th, 2012

We met with the ped surgeon today. After seeing the bump and noting it's placement he wanted to speak with a hand surgeon. Luckily he was between surgeries so they got a chance to chat. It is very close to the wrist and may or may not involve the wrist. They both agreed the wrist is a more complex area than just the arm, especially the wrist of a 15 month old. So before we can make any plans about removal we need to get an MRI done. So we are having an MRI done Tuesday afternoon and of course she will need to be under anesthesia because she can't sit still for 2 seconds let alone 30 minutes. Then we will meet with the surgeons again on Thursday afternoon and come up with a plan. It's one of those things where they won't know what it is exactly until they take it out, but they need to be extremely prepared for how they are going to take it out so it doesn't cause nerve damage to her hand. They could leave it in and just biopsy to verify if it is benign or not, but leaving a benign growth their might also impair some of her motor functions of her hand especially since she is so young. So I guess we need to wait until we get more info on Tuesday to know how to proceed. Keep the prayers coming, right now Adam and I need strength, wisdom and sleep, please pray for the doctors and pray for my sweet girl. I feel it in my heart that she will be fine, but I also feel like this needs to come out, so we need it to be done correctly. Otherwise we are doing fine, we are trying not to worry because that won't help. Luckily we are busy enough with everyday life to keep distracted. It's when we lay down to sleep that all the wondering happens. She is feeling good otherwise, she is protective of her arm, but I don't think she is in constant pain.

Thursday August 9th, 2012

Continued prayers for Delainey would be appreciated. We were back to the doc today for an ultrasound on her arm, which led to an appointment with the pediatric surgeon in the morning. We still don't know what it is exactly, we are just praying, praying, praying.

Tuesday August 7th, 2012

This momma is a little (okay a lot) worried about my Baby! I noticed Sunday night that Delainey had a very large bump on her forearm. Luckily her 15 month check was Monday morning so I could get it checked out. They did an x-ray and the bones look fine, they think it is soft tissue swelling but from what, I don't know. If it doesn't go away or get smaller by the weekend we will be taking her back in. Of course, I am thinking the worst even though the doc said I shouldn't worry. But if you could throw a sweet little baby girl in your prayers for me I would appreciate it!