Wednesday, November 7, 2012

Chemotherapy

I have had this written for some time now, but I haven't been able to finish it, and have half way tried to forget it.  Unfortunately it is apart of our lives, and something I will always remember.
 Once we knew that Clara's tumor was cancerous, and even though they had gotten it all out, there was still a chance that there were cancer cells left, and the only way to get rid of them would be chemotherapy.  Let me tell you what, I was not thrilled by this option!  It was devastating, but it needed to be done, at least that's what the doctors were telling me.  Obviously no one wants to give there child chemo, especially an infant.  David and I did research on alternative treatments, well David mostly did.  I was in denial about what was going on, and couldn't accept it. I knew we had to do chemo but wanted to believe that all this wasn't real. 
In Denver the doctors wanted to start Chemo the day after Clara's pathology came back.  Now remember Clara had been not even a week out of surgery.  She went in on the 24th of May my parents anniversary, and we found out she had cancer the 29th of May, mine and David's anniversary.  Her surgeon told us that she could put in Clara's broviac, which is a tube in her chest to where they could draw blood, and give her, her chemo, and it was another surgery she would have to go through.  We then sat down and met with the Oncologist and he told us Clara would have to get four rounds of chemo, and there would be three chemo's, Bleomycin, Etoposide, and Cisplatin. A round of chemo would be the combination of the chemo's over a five day period, and she would only get Bleomycin on the first day.  As the Oncologist was talking to us all I could think of and wanted to do was grab my baby and run, instead I asked for more time.  More time so our sweet baby could heal from her surgery she had just had!  More time for her to gain weight, just more time to get to know our little girl, out side of the hospital.  Dr. Graffi, the oncologist was very understanding, and we had until the June 18th before we would have to be back.  We got to go home the next day, May 30th.  we enjoyed our baby Clara. I was very grateful that my mom came back to Billings with us.  It felt like we had been going a thousand miles an hour since Clara was born, and for the first time since May 15th, I feel like we got a chance to catch our breath.  It was far from it all being over but it was a good break for all of us, especially Clara. 
This was right after she got her Broviac put in
We went back to Denver the 17th of June.  Clara went in for surgery the next moring, and it went great!  The surgery didn't even take an hour, and she was nursing two hours afterwards.  Chemo started the next day, and it felt like we were in hell.  I bawled watching them hook her chemo up to the pump.  It took about three hours to give Clara her chemo, and she responding just like any person would.  She would throw up, she couldn't get comfortable so she couldn't sleep, and so she would sceam because she didn't feel good and because she was so tired.  David and I took turns walking her and rocking her, trying to soothe and comfort her, but not much helped.  When I would nurse her, that would comfort her enough and get her to sleep.  Then I would hold her and rock her, until I could barley keep my eyes open, and I would try to lay her down, but the screaming would just start right back up again.  David and I figured out that it was the steriod they were giving her that would aggervate her so much.  It seemed like that affected her more than the chemo. 
We were grateful when saturday June 24th came because we got to go home.  Clara's blood counts were good, and she was eating good enough so we could leave.  And to top it off it was also her Grandma Mary Kay's birthday, so we had even more to celebrate!  The drive home was long, and Clara did great for the  8 hour road trip, sleeping most of the way.  Recovery was hard.  Mary Kay came and help us with Clara, and I am so grateful and love her for all of her help.  So not only did we have to try to help Clara get through her nausea and irritablity.  We had to learn how to flush her central line (her broviac) give her medicine through it, and change her dressing that covers the insertion point of the tube into her chest, and be sterile while changing the dressing. 

It took Clara about two and a half weeks to start feeling better,and it was awful.  I wanted to try to start cutting back on her anti nausua medicine, because they tell you to, but it was way to soon.  Clara was getting sick after each feeding, so we decided to give her all the medicine at once.  So even though we were giving her medicine to settle her stomach, we should have waited until her stomach was calm to give her more.  We didn't wait and she threw up all of her medicine.  It was thick and sticky and she couldn't get it all out on her own and wasn't breathing, David turn her over and started thumping her back and I ran out of the room to get her nose sucker.  She didn't breathe for what seemed like hours but it was probably only 2 seconds, but those were the longest two seconds.  When I ran back into the room, David gave her one last thump on the back and she got the part of flem/mucus out of her throat that was preventing her to breathe and just was screaming.  I had to suck out the crud from her nose and her throat.  After that chaos things seemed to get a little better each day.  By the time she was feeling really good guess who started smiling!!  I tell you what, she has the best smile I have ever seen in my life!  It melt my heart every time, and David and I work so hard to get her to smile again.  She like making us look like lil' fools! 
And this is her after her first chemo. she sleep a lot which terrified me.

Wednesday, August 15, 2012

3 months

Clara is three months old today!  I can't believe she is three months already, and that it has only been three months since she has been born, if that makes sense.  David always gets mad at me for posting such depressing things, and to tell the good happy stuff.  A picture is worth a thousand words so here is some good happy stuff....


I can see you!


framing her face while she sleeps

With aunite Mary Ellen

what an angel

the 4th of July


during her 2nd round of Chemo

Trying to talk to mommy

She changed her mind!  ha ha!  So cute!

She was mad I was taking her picture

Then she was happy!

She can not believe how pretty her mom is.. ha ha!

She is on her changing table probably pooping!

Look at those rolls coming in! and That is her central line

Clara and mommy, she is tired

So cute!


Clara and grandma Mary Kay


Sleeping like an angel during her 3rd chemo treatment.

She loves the hospital's monkey bouncy!!

Clara loves her dad so much, it makes mommy jealous!

waking up...

She was suprised I was taking a pic.  She gets pretty swollen durning chemo, because they give her a ton of I.V fluids around the clock

Such a sweetie

David and I were trying to get Clara to smile for the camera, which is tricky because she always glares at it when we put it in her face to take the picture so I had the camera at ready on my lap to snap the picture when she smiled, and that's why David's head is cut off a lot ha ha ha!!

Getting closer!

and we have a smile, and the safety band from the camera

And perfection!  This is the best thing I have ever seen!

sooooooo cute!  I love her!!

They were both watching the news, Clara was clearly shocked by what was going on

My adorable baby!

Getting love from her daddy!

And this is her today, 3 months old!
Clara is all of the good and all of the happiness in our life.  She is such a blessing... I am so proud to be her mom.

Monday, July 2, 2012

The pathology



       Clara recovered very quickly from her surgery.  The doctors told us she would probably be on the venilator for 48 hours minimum, and she was taken off at barley 24 hours!  She was only given tylenol for pain management, and that was it, she was a little champion through it all.  The tylenol took away all the pain she felt...  I couldn't believe how strong our little girl was.  David and I would tell her before and after surgery that she is so strong, and by how well she was doing, she was proving it.  I loved when they took her venilator off, and she was able to nurse, quickly after they removed it.  The IV's soon followed one at a time, the one in her head was first.  We were very grateful to get that one out, epecially David, he hated that one most of all.  She got a nice little sponge bath after to get all of the crud out of her hair from the tape that held on the IV.  She cried the whole time, wore herself out, and fell asleep.  
The most hated IV in her head, they had to poke her nine times before they even got this one in a vein!

After they took the IV out, she didn't even cry!
We didn't get any picture during the bath, it was an all hands on deck kinda bath, but we sure did get this cute one right after!

All pretty and clean after her bath!!



       We were finally done with the surgery, Clara was recovering and healing beautifully, and we were very eager to get home, and to finally be done with all of the chaos! To really go home, like the original plan after Clara was born.  Clara was five days out of surgery, and Dr. Bruney, her surgeon, said that we were good to go home!  They would get her discharge papers ready, the nurses would teach us how to care for her incision, give us our discharge instructions and we were good to go!  They said we couldn't leave until the pathology came back, but once it did we would be on the road.  Both of our mom's packed up the rooms they were in, the car was loaded, and now we just needed the pathology report.
       David and I and our mom's were all in with Clara just excited we get to go home.  Dr. Bruney came in, and had the nurse pull a chair in for her.  She sat down with us, and said I've been checking every half hour on the pathology report, and it's in.  It confirmed that it was a sacrococcygeal teratoma tumor, and that 78 percent was mature teratoma, 20 percent was immature teratoma, and 2 percent was malignant..... That knocked the wind out of me.  2 percent was malignant, what did that mean, the got the whole tumor out so she fine.  This was all going through my head.  I finally got my breath back and asked what that meant, and what we had to do.  Dr. Bruney then told us we would have to do chemotherapy.  I started bawling, this wasn't fair, she had already been through so much!  She was only 14 days old!  In infants who get these type of tumors, 95 percent of them are benign.  Then she started saying Clara could go in for surgery the next day to get a central line, broviac, put in, where they would administer the chemo....
       I couldn't think, all of this was happening so fast, and Clara had just one through so much already.  Once Dr. Bruney left, I had to leave too.  I had to catch my breath.  I didn't know what to do, I know I didn't want Clara to get chemo, and I could hear about it anymore.  I went down to the chaple they have in the Children's hospital, and pleaded with God to make this go away, to please let it be that the pathologist made a mistake and read it wrong!  But it wasn't wrong, Clara had cancer, her tumor was now classified as a germ cell tumor.

Saturday, June 30, 2012

Clara's surgery

After the doctors saw the tumor, they wanted to get it out quickly, but they couldn't do the surgery here in Billings, they'd have to do the surgery in Denver, CO at the Children's hospital. When we saw the doctor again that night, they told us that they'd probably fly us out the next day.  So then it was just crazy planning after that on how we would get David to Denver.  David's sister Jackie, and Clara's Godmother, drove in that night so she could see Clara before we left, and Clara and her aunt Jackie have the same color of hair.  One of the nurses even thought Jackie was Clara's mom =).
The next morning, Thursday, Clara was baptized by Father John, the same priest who baptized me earlier in April.  It was such a beautiful sweet baptism.  The spirit and love that was in that room was tangible.  Both of her God parent's were there, and just a few family and friends, what an amazing thing to be a part of and witness.  Clara was truly sent by our Father in Heaven to us, and you could feel His presence in that room with us. 
Clara's baptism was the only calm and peace we had felt in what seemed like forever.  It seemed like weeks had gone by since she was born, but it was only two days.  David and I were exhausted in every sense of the word, and in every way possible.  The surgeon who would be performing Clara's surgery called and talked with me, telling me that getting her tumor out wasn't so urgent she needed to be flown out that day, but that we could wait over the weekend and drive down.  I was grateful for the time that we'd get to spend with Clara at home, for the couple of days we were able to. 
We didn't get to leave the hospital until Friday, because her temp was a little too high, and her blood sugar needed to be like 50 or something like that and it was 48!!  So that was ridiculous, but we finally got to go home.  Being home with Clara was bitter sweet, because we knew we had to leave soon.  While we were home she got to meet aunt's and uncle's and more cousins!! 
She had a pre-op appointment for Wednesday of next week and surgery scheduled for Thursday.  The days leading up to her surgery where full of emotion.  David and I would find ourselves just watching Clara sleep, and we would just cry and cry and cry.  There were so many tears, and they never did quite dried up.  We drove down to Denver in two days with David's mom, and meet my parents there.  It was good to see my mom and dad, and I just keep pretending that, that was the only reason we were in Denver, just to see them. 
Reality set in the next morning, and couldn't be avoided.  Clara had to have a x-ray study done to look at her bladder and kidney's to see if see had reflux in either one of them.  She had to get a catheter and have her bladder filled up.  It was awful.  That was the hardest we had ever seen Clara cry.  As they were doing it, they asked me to hold her hands above her head and try to hold a pacifier in.  I just stood there and cried with her.  David was ready to kill the x-ray tech. who was inserting the catheter.  The results of that showed that she has reflux into her left kindey, so she has to be on amoxicillian for a year now to avoid a bladder, or kidney infection.
We met with Dr. Bruney, our surgeon.  She showed us the MRI, and we saw Clara's tumor for the first time, and it was huge... it made my heart drop into my stomach, and I just cried, and didn't stop until that night.  Dr. Bruney then explained to us how the procedure would go.  She would first make an incision in Clara's back, and loosen the tumor there, and then turn her over and make an incision on her stomach hip to hip, and take the tumor out the front.
The yellow outlined is her Bladder, the Red is the sacrococcygeal teratoma, and the little node on the bottom was the bump we saw whe she was born.
 We checked Clara into the hospital that night.  The next morning the surgical residents and fellows keep coming by and bothering Clara, which was bothering me, because Clara had to stop eating at 6am so she could have her surgery on an empty stomach.  So when they'd come and wake her up, I could have killed them, because all they did was look at her bump, that is it.  They were all going to see it in a matter of minutes so couldn't they wait until then to take a look... noooo. they had to wake up a starving baby and leave, and David and I would be left trying to calm Clara down. 
It took forever for them to come and get Clara, and they didn't start her surgery until noon, so she went six hours without eating!  The anesthesiologist came and told us the drugs he'd be using to put Clara to sleep, and for pain management, which he could have fed us fake names of the drugs and I wouldn't have known the differance.  He also told us that there was a 90% chance that Clara would have to get a blood transfusion, because it was such a big surgery.  It seemed like our news got worse and worse.
But as David and I were waiting for them to take her back to surgery, I had such a calm feeling, I couldn't have cried if I wanted to.  The night before I was a wreck, but surgery day, I was at peace, almost, and I know it was because of all the thoughts and prayers that were going up on Clara's and our behalf.  I love and am so grateful for all the prayers offered at that time and for all of you who where praying and thinking of us, you made a huge differance there, and I am forever grateful, and I am grateful to my Father in Heaven who listened. 
We were updated every hour, and Clara came out of surgery at about 5pm.  Dr. Bruney came out and told us she did great, and that they only had to do the one incision in her back, and they were able to get the entire tumor out!  I thank God for the miracle He helped Dr. Bruney with, because it was nothing short of that.  Then the anesthesiologist told us she did great, and she didn't need a blood transfusion!  They also told us she was on a venilator to help her breathe, because she is so young and the heavy dosing of the narcotics.  They also said they gave her a paralytic, so she was paralized until it wore off.

This is Clara the morning after her surgery.

David, Dean and I went to the NICU right after we talked with them.  I hate even now thinking of how she looked.  David and Dean both walked up to her.  Dean said she looks great, considering everything she just went through and how it could have been worse.  David looked then walked away, but I couldn't bring myself to go over to her for a couple of minutes.  When I did my heart stopped.... The nurses were cleaning off the steralizer they used during surgery, and Clara's body was so limp, she had IV's in her head, arm, and one right by her clavical, and tubes coming out of her throat.  You could see the venilator manually breathing for her.  David could see how upset I was and wrapped me in is arms, as I barried my head in his chest, and just cried for Clara.  Seeing her little body there so motionless, I could barley handle it.

Friday, June 29, 2012

A parent's worst nightmare

       David and I were on the highest high, when Clara was born.  I was able to hold her skin to skin the first hour and a half of her life.  As I was holding her we just gazed into eachothers eyes, never happier or more content to look at anything else, I could have, and still can, stare at her forever.  Eventually we had to get her cleaned off and wrapped in a blanket, so the nurse took Clara and started cleaning my little angel off, and inspecting her making sure everything was in tip top shape, and then the nurse and David both noticed a little bump on her bottom.  It right where her butt crack was, or would be.  The bump raised up her butt crack so she didn't really have one.  You could see the concern on the nurse's face, but she acted as though she wasn't worried or concerned.  She just said we'd have the doctor in to take a look at it.  Clara was perfect other wise.  It didn't bother her when they pushed, poked, and lightly pinched her little bump. 
       Mary Ellen, Grandma Mary Kay and uncle Tom all came in right before she got wrapped up.  Grandma Mary Kay is a RN, and has been for 30 plus years.  I asked her to take a look at Clara's mystery bump to see if she had any insite on it.  It worried her, but she didn't tell us that until later.  Once Clara was all wrapped up we all took turns holding her.  Dean, Mary Ellen's husband and Clara's Godfather, came in with Hannah and Alyssa, their daughters.  They just quietly stared at Clara while their parents held her.  When Alyssa, the six year old, came in she look at me and said, Starr doesn't look any different to me, and came over to me and asked me how I got Clara out.  I keep telling her to ask her mom, and she just keep asking me to tell her... I never did, and neither did her mom.  Luckily for us, her 12 year old brother filled her in.... babies are pooped out!  ha ha ha ha!!
The doctor came in and looked at it and said that she would order an ultra sound so we could see what the bump might be.  I wasn't too worried, I had a feeling that everything was going to be alright.  The next day we had the ultrasound and it turned out to be inconclusive.  But it did show that her spine was great... because the bump was so low on her back and right at the end of her spine, some were worried that it could have been interfering with it, but that turned out just fine.  There concerns now where that maybe it was just a cyst or it was a piece of her gut.  While she was forming they explained how all of our guts are outside our body and then they all puzzle there way back into our bellies, and that this bump may be an extra piece of gut, or that when her guts where going in, one piece got stuck in the wrong spot, but we wouldn't know without an MRI.  After that explination I started to worry, because our family history is not in our favor when it comes to our intestines.  She got her MRI that night. 
I was amazed at how quickly tests, the MRI, and the ultrasound were done on Clara.  I didn't realize then how worried everyone was, like I know now.  They wanted to find out what was wrong with our little girl, and quickly.  The MRI was read that night, i'm pretty sure anyway this part gets kinda blurry to me.  One of the higher up pediatrictians came in and told us there was a 9X4cm mass in Clara's pelvis, the dotor said she thought it was a teratoma tumor, but we wouldn't know for sure until it was taken out, and the pathology came back.  Then she said that Clara had to have surgery, if she wouldn't have said that  I wouldn't have put it together, I was in such shock.  I heard what the doctor said but I couldn't believe it. Clara was perfect, she was healthy and wasn't suppose to have anything wrong with her, just like all the babies that were being born by my friends and family.  It seemed like there was a baby born everyday in May and all of them where fine and healthy, and that is how Clara was supposed to be!  She shouldn't have this HUGE mass inside of her!  She is way to little! And it's not fair!!!!!!

Wednesday, June 27, 2012

Clara Lois Allen

Pregnant to Parents...
       I went into labor with Clara at about eight o'clock tuesday morning on the 15th of May, which happens to be my grandma Lois' birthday who Clara is named after.  I had not been able to sleep well my last month of my pregnancy, and so I was up at four in the morning in the shower trying to find some way to relax my body so I could sleep.  Unfortunately the shower didn't work, and I was awake until six, and David would be getting up 20 minutes later to get ready and go to work.  David would ask me every day before he left if he thought I was going to have the baby, I would always tell him, "I don't know, if I knew I wouldn't be so miserable!"  But ironically, that morning, I felt different, and told him that there was a 50/50 chance that I'd have the baby today. 
       I got a twenty minute nap after he left, and that is about when the contractions started.  I was bound and determinded to have our baby without an epidural, and all the books and people say, you should wait as long as you can before you go into the hospital, and keep yourself busy.   So I got up, got dressed, pulled my hair back, and took our dog, Harley, for a walk, (and just food for thought for other pregnant women who want to stay busy while they are in labor, don't take your dog for a walk, if your dog is annoying to walk.)  Harley is the most annoying dog to talk take for walks, and when a contraction hit, which they were coming about every four minutes, I could have killed her and rolled over and died!  On my walk I called David and told him he needed to come home now!!  David couldn't leave right away because two of the sports teams were gone for the day and all of there subs were already being utilized in the other classrooms, for the teachers that were gone on the sports trip.  David then called his cousin, who is also my God mother, and she came to me so I wouldn't be in labor alone. 
       Mary Ellen met me at my house and would time my contractions, they were speratic but coming every 3 to 5 minutes.  We called my midwifes, and they confirmed I was in labor and said I could go into the hospital now or wait a little, it was about 9:30, and I decided to wait, I still needed to shower, fix my hair, and put on my make up, so I could look good when I had this baby.  Also at this time, tons of people, my sisters and sister in law were calling to check in, I still hadn't gotten a hold of my parents, but they would find out soon enough.  I didn't want to talk to anyone so Mary Ellen took over answering the phones, while I was going to shower.  I never made it to the shower, I started feeling a lot of pressure, and that freaked me out! After talking it over with Mary Ellen we decided it was time to go to the hospital, I guess she didn't want to chance delivering the baby, ha ha!! Mean while David is still at work, and it takes him 45 minutes to get back home!!  We got to the hospital and checked in around 11, and I was dialted to a five, so I was on my way.  I told them no epidural, and no IV, I wanted to have her natural, after monitoring the baby for 15 min, to see if she was handling the contractions, I was able to get into the jacuzzi tub and stayed there until 230. 
       David finally showed up at noon, and I was soooo glad to see him.  He was amazing during labor.  I thought he would lose it, but he was my rock.  He keep me strong, and helped my find strength when I was feeling weak.  When I got out the the jacuzzi tub they checked me again and said I was only dialted to a six, they said they could break my water and it would make me progress faster, but it would also intensify my contractions, it made me too nervous so I said I would wait.  David suggested we stand and walk around for a bit and let gravity play it's part, my contractions were getting stronger and stronger,  David and I would sway "dance" together, but I just wanted to get back into the jacuzzi tub, because I at least found some comfort in there, so at 330 I got back in.  My contractions were so strong, and David asked if I wanted them to break my water so we could at least be done more quickly.  I told him at four they can check me and if I hadn't progressed more than a cm, I wanted an epidural.  At that point I was so tired, and I just wanted a break. 
       At four they came in and check me, and I had dialated to a 9, and at that point I let them break my water.  They asked if I still wanted the epidural, and I said I made it this far, I mine as well go all the way.  I started feeling pressure and started pushing at four thirty.  I pushed and pushed and pushed for what seemed like forever!! and Finally after much anticipation, Miss Clara Lois Allen made her enterance into this world at 5:23 pm.  I will never forget the first moment I saw her.  Her eyes were wide open and she was looking right up at me, I look back at her with so much disbelief, but with an overwhelming love for this sweet little baby.  I looked up at David, and tears were streaming down in face.  That moment at 5:23pm, was the most perfect and happiest moment of our lives.  That moment changed our life, we went from pregnant to parents. 
8lbs, 19 1/2 inches