4-29-15

Hannah (the nanny), the kids and I worked hard to get everything packed up so we could leave to be at Children's by 1:00.  Haley had a clinic apt at 1:10.  We left the house a mess.  Oh well.  Baby Hannah was able to keep a few ounces of milk down and a banana and a few blueberries.  I made a dr apt with her naturopath anyway just in case she didn't keep it down and they needed to give her fluids.  She hadn't eaten or drank anything (that she didn't promptly vomit up) for two days.  Hans ended up taking her and I took Haley to her clinic apt.  When I got to the camper Haley was leaning over a puke bowl.  She spent the rest of the day like that.  Her tummy is just not feeling good today.  She would even puke up her anti-nausea medication.  At clinic today Haley's nurse was so patient and kind.  Haley had a bandage over her port that needed to come off.  The nurse patiently waited for Haley to take it off by herself.  It took about 45 minutes.  The nurse was praising her and encouraging her as she went.  After her clinic visit she spent the rest of the day just laying around in the camper...with her puke bag close by.  Hannah took Morgan, Isaac, and Ashley over to the Ronald McDonald House to hang out.  I headed over with Josiah later and we ate dinner together.  Hannah, Haley and Hans stayed in the camper.  I brought food back to them.  (For those of you smarty pants that are wondering where Elizabeth is...She stayed home so she could go to her Wednesday night class with her grandma.  She'll spend the night at Grandma's and then come up.)  Groups come in to cook for the people staying at the house.  Very much a blessing.  Even if it's not what we would normally eat.

Baby Hannah didn't end up needing to get fluids because she kept her breakfast down.  You can tell she doesn't feel good today but she was at least able to keep a little food and water down.  Thankfully, no one else but Haley feels sick.

We got a hotel (paid for by the health insurance) to stay in until a room at the RMH opens up.  I followed Hannah over to help her get checked in and get the children settled.  The room we got smelled terrible...No it was worse then terrible.  It was very strong air freshener trying to cover up the smoke smell.  I started to get a head ache after just a few minutes.  So back down to the front desk with all the kiddos.  Josiah was so cold his lips were blue.  Hannah only wanted me to hold her.  The front desk guy said there were no other rooms.  We were turning to leave when another guy said, "I can put in in room ___"  So back up to the third floor to pre-smell this room before we bothered moving all our stuff into it.  We had to take the stairs this time because the elevator was broken.  The new room passed the smell test!  YEAH!  By this time it was about 8:30.  After baby Hannah fell asleep I headed out with Josiah to go back to sleep in the camper with Hans and Haley.  I am falling asleep while I'm typing so this is all your going to get for now.         

4-28-15

Today was the day I was supposed to pack up and move to Seattle.  I have been able to hold it together emotionally through this first round of chemo.  No doubt in my mind that my stability is a direct result of the body of Christ bearing this burden with me.  You have cried for me so I could be strong!  Today however a wave of being overwhelmed washed over me and the tears began to flow.  It didn't take to long before I was back on my feet...packing things up.  I found someone to cat sit and plant sit for us (for the next 8 months) and by the end of they day they were out of the house.  A friend came over and helped tidy up and she even gave my boys hair cuts.  Haley was feeling pretty nauseous but she was actually up (in her wheel chair) and I even saw her smile for the first time in several days.  That was so good to see.  Haley took a shower and I helped her take her dressing off (much to her dismay).  Her skin is super sensitive on her right side where they put the port in.  After her shower he headed up to Seattle to stay in the camper with her daddy.  We thought it would be best for her to get away from her baby sister (almost 2) who had a fever and could not keep anything down.  Not even an ounce of water.  It's really hard to get a lot done with a sick baby.  The bottom line is...we will be making many trips back to finish the move up to Seattle.    

Day of Discharge

4-26-15

Day of discharge

I slept in the camper last night.  Daddy slept in Haley's room.  I got there about 7 am.  Haley was sleeping sounding.  Daddy headed out to the camper to get some sleep.  (It's very challenging to get sleep in the hospital for multiple reasons.)

At rounds this morning the dr agreed to take her off of ativan.  That is the drug that makes her feel groggy and weird.  She doesn't like it.  So hopefully in a couple of hours that will be out of her system so she doesn't feel that way anymore.  She had a drug scheduled at 3 today.  The purpose of it is to help her body replenish the white blood cells that have dropped from the chemo.  Since she will be at clinic tomorrow the dr said she could just get it there so it doesn't hold us up from discharging today.  I really want to go home today.  I'm missing my other children...and they are missing their mama.  Grandma mentioned Hannah missing me and Josiah (age 3) said, "miss mom and dad too".  Sweet boy!  Currently at 11:30 she is free to go.  We are just waiting for her to wake up. 

Haley has a clinic apt tomorrow, Wednesday and Friday and next week she'll have it Monday and Wednesday.  We are currently on the Ronald McDonald House waiting list.  I've yet to figure out a good plan of how to make the move.

Haley slept and slept and slept.  We didn't end up leaving until after 3.  Haley was to sleepy.  She probably would have chosen to sleep but they needed the room.  We were going to stay in Seattle with Haley since she had a clinic appointment tomorrow.  But I couldn't stand the thought of being away from my other children any longer.  The older ones would have been alright but the littlest really wanted their mom and day.  This time away hit Hannah the hardest I think.  She cried...no...it was more like sobbed as Hans and I held and cuddled her on the couch.  She did that for quite a long while.  I've never seen her like that before.  I was so glad to be home.  Especially good to sleep in my own bed!  

Haley was far from her normal perky, happy self.  She came in the house and laid down.  Not wanting any interaction from siblings and not even answering my questions with words, but head nods.  It's so hard to see her like this.  Morgan slept on the couch to be her "nurse" if she needed anything in the middle of the night.  Haley's been sleeping in the living room since we found out about the tumor.  It's took challenging for her to climb the stairs and certainly climbing up to the top of the triple bunk bed.  Although, the nurse said she can walk again, Haley is not interested in doing so.  She is afraid that it will make her leg hurt again.   She was having a lot of pain before she stopped using it.  Her pain in minimal now and she doesn't want it to get bad again.  So she continues to use the wheel chair exclusively. 

Clinic

4-27-15
First clinic visit after chemo

I couldn't stand the thought of leaving my children after having been gone so many days already.  So Hannah (the nanny) and I packed up the children and headed to Seattle.  It was pretty rushed because Haley's apt was scheduled for 3 but I had left a message over the weekend asking if we could bump it up.  I did not want to face rush hour traffic driving home.  I got a call about 9:30 telling me that they had moved me to noon.  So we wrapped up Bible time and quickly downed some breakfast, packed a lunch and off we went.  Only to be completely stopped (and or barely moving) on 167 because of an accident.  After about an hour of that I was able to get off the freeway and go a different way.  We were about 45 minutes late to the apt.  Haley was not excited about going to this apt.  And when the nurse found out how much Haley was able to drink since her discharge yesterday (less then 1 cup) she ended up needing to get fluids which means the nurse had to access her port.  To different times, two different people tried to weigh Haley and she just flat out refused to cooperate.  She is in a wheel chair and she would not get up to stand on the scale.  I try and stay in the back ground and let the nurses do what they know how to do.  I only intervene if I"m asked to.  Okay so she didn't get weighed...let's move on to the next thing then.  The nurse had put a numbing cream over Haley's port so that she wouldn't feel the poke.  The unfortunate part was they covered the cream with glad press and seal (it sticks to the skin well and is easier to peel away than tape).  Well, Haley's skin is still very tender from the port placement on Thursday and she was not interested in letting the nurse or myself pull the press and seal off of her.  So the nurse ever so patiently and encouragingly allowed Haley to pull it off herself.  This process took about 45 minutes...just to get the press and seal off.  Haley did a great job holding still while the nurse did what she needed to do.  She screamed, but the nurse re-assured her that it's okay to scream if she needed to.

The dr finally called me in for back up to get Haley weighed.  I ended up picking her up and standing next to her on the scale in order to make it happen.  Then they just subtracted my weight.  About 2/3rds of the way through the apt the nurse told me that the clinic got a call from the playroom where the other children were with Hannah (the nanny).  They informed her that baby Hannah (not quite 2) had just vomited.  NICE!!!!  Haley (understandably) did not want me to leave to go deal with the situation so the social worker went down to give direction.  I had Hannah take the three youngest (Ashley -5, Josiah - 3, and Hannah 21 months) to hang out in our 5th wheel camper that was set up in the parking lot and the three older (Elizabeth - 12, Morgan - 10, and Isaac - 7) she would bring back upstairs to be with Haley and I in the clinic room.  After a couple more screaming sessions, (and a whole lot of snacks) she had received her fluids and we were on our way to check on the littles.

*Funny rabbit trail story - Isaac was in the bathroom.  Which happened to be just right across the hallway from the room Haley was in.  I kept hearing nursing asking someone, "are you alright".  It finally dawned on me that while he was going to the bathroom he pushed the help button.  So the light was blinking outside of the bathroom and a little alarm (beep) was going off.  He couldn't figure out why no one would let him go to the bathroom in peace.  We all (except for Haley who wasn't in a laughing mood) got a good laugh out of it.

Anyway, by this time it was 5:45ish.  There was no way I wanted to battle traffic to get home.  I had endured enough battle today.  So we just hung out.  Baby Hannah was wanting to eat.  I reluctantly gave in to her request.  I took the kids for a walk.  The weather was absolutely gorgeous.  We stopped by the Ronald McDonald House.  The kids wanted to look around their soon to be new home.  The wonderful friendly staff loaded us up with three bags full of snacks and drinks.  And we got a purple bracelet that will allow us to have access as "day use" guests.  We can do laundry, use the kitchen and even join them for special events.  Things started to go down hill when Josiah started complaining that his tummy felt sick.  Back to the camper we went.  Just in time to get baby Hannah inside right before she vomited for the third time today.  Okay!  Time to go home!

We will return again soon however.  The nurse informed me that Haley must be moved to Seattle by Wednesday.  It's simply not safe for her to be so far away from the hospital.  She could get a fever and go down hill very fast.  And she MUST be close!  Okay then...Not sure what that is going to look like...especially in light of the tummy trouble.  Josiah rode home with a puke bowl close by.  Hannah vomited again in her car seat on the way home.  And Ashley took a puke bowl with her to bed.  Life is full of surprises.  What ever would I do with out my blessed nanny?

P.S. The nurse didn't arrange for an NG tube to be placed.  Manly because it had gotten to late and the folks that do that had already gone home for the day.  But if Haley can't drink enough then that will undoubtedly end up happening.              

Day 2 of chemo

Haley pretty much doesn't want to have anything to do with nurses or doctors or any other person from the hospital.  She puts her head down and doesn't respond to them.  Today is day 2 of chemo.  We are so very thankful that she has not experienced nausea/vomiting.  Cisplatin (one of the chemo drugs they are giving her this round) is notorious for causing that.  Praise God!!!  The drugs they are giving her to off set the nausea/vomiting are making her very groggy and she has slept most of today.  But i suppose that is better than the alternative.  Yesterday was full of different "teachings".  I met with nutrition, pharmacy and a transition nurse.  It was a full day of teaching with Haley's first day of chemo on top of that.  I'm so grateful my mom was with us.  She was able to tend to Haley while I was in all the teachings.  There was more teaching today but not as much.  It's important for us to learn how to care for our now immune compromised daughter.   For example, if she gets a fever over 101 than we have to take her to the ER with in the hour. 

Hans (Daddy) was able to bring the camper and get it all set up in the parking lot of Childrens.  When he came into the room and sat next to Haley she began to cry.  She'd been through a whole lot since she saw her daddy and she couldn't even tell him about it so she showed him how she felt about it.  Which in turn made daddy cry.  It was sweet. 

4-25-15 

Day 2 of Chemo

Last night Hans and I slept in the camper and grandma stayed with Haley.  It felt so good to sleep.  The "bed" (I use that term lightly) in the room is terribly uncomfortable.  Haley was still sleeping when I got to her room.  Grandma said she did great.  She had to get up every two hours through out the night to pee.  The wake her up to do this.  From what I understand, she needs to do this to protect her kidneys from the extreme toxicity of the chemo drugs.  * Sarcasm warning *  I just love the warning sticker posted on the outside of Haley's room.  It says HAZARDOUS DRUG PRECAUTIONS start date 4/24/15.  The nurses suite up with gloves, gowns, and masks with eye shields to hook her up and also to dump her pee.  And yet we are injecting this hazardous drug right into my baby's blood stream.  These drugs that are known to cause cancer.  It makes NO SENSE to me.  I'm so grateful that the God I serve is bigger then these hazardous drugs!!!  And my hope is in Him alone.

Haley did wake up to eat breakfast.  She hung out with her daddy while grandma and I went to the airport to pick up Hannah (the nanny).  We came back and had lunch with Haley but by this time Haley was so sleepy we fell asleep with her lunch still in hand.  She slept pretty much the rest of the day.  When she woke up around 7 pm she complained of her tummy being upset and she didn't want to eat dinner.  After she had a bm she felt a bit better but was still very out of it.  We had about an hour of major drama over her ID bracelet.  Poor little sweetie.  She does not like what is happening.  Sometimes she choose to make huge deals about the silliest things.  I suppose she is just trying to get control where she can.  In an attempt to distract I played a dice game with Haley for a little while.  Even in her groggy state she won!


    

The official journey begins

Yesterday Haley got her port put in. The surgery wasn’t until noon (or at least that is when it was scheduled for). Her spirits were up while we waited.  She was relieved to know that they were going to give her gas to put her to sleep before they put the IV in.

being silly

NO MORE PICTURES!!!

She HATES to be poked. She ended up needing to be poked the day before at clinic for a blood draw. But this smart mama (knowing her intense dislike to pokes) had gotten a prescription for the numbing cream. So I had both hands and arms creamed up with the special tape that the hospitals use. Although she didn’t want to admit it, she did not feel a thing! That was nice. Anyway, back to yesterday, because she had the chicken pox three weeks ago her surgery start time was delayed. Finally, a veteran doc came in to take a look at Haley to determine if she may still be contagious. He said she wasn’t so we could go ahead and get started with out having to prep the OR. While we waited I was showing her all the video clips I had on my camera (mostly her baby sister Hannah being very cute). The allowed me to suit up and go back to the OR with her as she fell asleep. My mom was with me since Hans (my hubby) had to work. We waited and waited and waited and finally got word that Haley was in a room. They were supposed to call me so I could be with her after she started waking up. Oops! When we got to the room Haley was quite upset. It took a couple of hours for her to calm down and rest. But by the end of the day she was eating (the food I brought) and drinking and watching movies. She even gave me a little smile when I took her picture. I’ll see if I can’t figure out how to post it. Today she will have her first treatment of chemo. But before they do that they spend two hours giving her a ton of other drugs to help with the side effects of the chemo. I’m going to be talking to the dr about allowing her to use some of the natural things I brought (that so many people have used successfully to combat the nausea and vomiting when doing chemo) instead of so many of the drugs. We shall see how that goes. At the present she is sleeping peaceably. The plan is for Hans (daddy) to come with the camper after work to park in the parking lot.

E-mail update

Haley, grandma Debbie & I met with the oncologist from Mary Bridge today.  Haley liked him better than the oncologist at Childrens.  (I think that is primarily because she heard the diagnosis from the Seattle oncologist first.)  Never the less Mary Bridge is a MUCH smaller hospital so Haley would have more consistent interaction with the dr there.  Instead of the rotating shifts of residence at Childrens.   There are certainly pros and cons to both locations.  We are heavily leaning toward Mary Bridge at this moment.  The treatments are the same at both locations.  Haley's surgery (at 10-12 weeks in) will have to be at Childrens.  They don't do that at Mary Bridge. 

The oncologist is pushing HARD to get her started on treatment early next week.  Haley has an appointment Monday with an ND at the Tahoma Clinic.  He wants to get some tests done before she starts treatment to get an idea of why she got cancer in the first place.  This information will help him to know how to support her during this chemo time and after.  He strongly believes that if the reason she got cancer isn't dealt with it will come back.  If that happens, it comes back even meaner and uglier than before.  Cancer is just a symptom of a body that is not functioning properly.  Simply killing the cancer is not enough.  Please pray with me that God would allow enough time for the ND to get all the tests he needs done before they force us to start chemo.  I say force because there are other clinics (in other states) that offer other treatments.  That would be our first choice.  But my friends, in this state, parents do not have the right to make such decisions for their children.  Both hospitals have made it very clear that if we pursued other treatments they would be "obligated" to call CPS on us for medical neglect.  This is nothing short of medical tyranny.  But God is good and He has prepared us for this battle.  And He is fighting for us.  He is our Rock.  Our hope. Our salvation.  And we praise Him.

Undoubtedly, Haley will have started chemo by this time next week.  Thankfully, my hormones have evened out and I am able to be strong (in the Lord) once again and fight this battle with out constant tears.  In fact, I started feeling that strength only a few hours after I sent out the last e-mail.  God is answering your prayers mighty warriors!  Thank you (doesn't seem adequate) for holding my arms up!

Hugs ~ Nicole                

P.S.  A friend gave Haley $10 to buy herself a gift for being so brave at her apt on Monday.  (it was quite traumatic for her)  She said she wanted to buy a baby chick.  (Our local feed stores are advertising that "chicks are in")  Well don't you know...We have two chicks, in a tote, in our living room getting LOTS of love!  This will be a weekend affair.  Monday we will take them to one of my friends that has chickens and donate them to her flock.  What a weekend thrill for Haley.  ...oh the things we do for our little ones!

God is good...all the time!!!!

When we lived in Michigan I read a book called "the detox book" by Bruce Fife. That booked opened my eyes to the fact that all these degenerative diseases (the majority of the time) are preventable. Thus my journey of taking better care of my body and my family. Avoiding things like artificial color, preservatives, and processed food. I started making my own bread and food from scratch. In doing so I lost 45 pounds in five months. I wasn't even trying to loose weight. I was just trying to get healthy. Along the way I met several people that shared with me their story about how they changed their lifestyle and were now cancer free with out doing chemo or radiation. That really got me thinking. If people can be healed from cancer with out doing chemo why in the world aren't more people doing it? In the mean time, I'm watching loved ones suffer and die after being treated with chemo and radiation. Heart wrenching!!! At that point I had determined that if I was ever diagnosed with cancer I would not turn to conventional treatment for help. However, I really didn't have a clue as to what I would do. I saw a book called, "cancer step outside the box" by Ty Bollinger. It took me a couple of years but I finally bought the book and read it. That was March of 2014. Interestingly, that was the beginning of a series of trials that seemed to get more and more intense. April 2014 Hans was in a car accident. Just as life seemed to be getting back into a groove our three year old son Josiah fell in the kitchen and broke his left femur. (He has stability issues because of a stroke that he had during one of his heart surgeries when he was three months old.) He was taken into surgery and had a spika cast (both legs casted) put on him. He had the cast on for five weeks. After he got the cast off it took him six weeks to even show interest in wanting to walk again. Just when I felt like my sanity was slowly returning another wave crashes down on our family. Hans was diagnosed with an inverted papilloma (tumor) in his sinuses. Praise the Lord it was not malignant (cancerous). Never-the-less, I felt compelled to continue studying and researching alternative cancer treatments. We were happy to say farewell to 2014. And we looked forward to a much less medically challenged 2015.

Late January 2015 Haley began to have pain in her right knee. We thought she may have injured herself roller blading. By Mid February we had told Haley that she is not allowed to roller blade anymore (much to her dismay).

Late February, with the encouragement of a friend, I joined heritage defense. It felt good to know that if I ever got a knock on my door from CPS that I would be able to call an attorney 24/7.

I've never been one to rush to the Dr for myself or my children. However, I made all my children well child check ups with a naturopath in Seattle. March was full of appointments with the new naturopath clinic. Haley's appointment was March 4th. Of course we asked the dr to take a look at Haley's leg. She wrote her a script to get an x-ray. We were going to try some enzymes for a week first to see if that helped. When she did not find any relief with the enzymes Hans took her in to get an x-ray. That was March 14th. March 15th we got a call from the Dr telling us that something was terribly wrong with Haley's leg. It was either a bad infection or cancer and we needed to take her to the ER right away. That is easier said then done. We began to pack and make arrangements for our other 6 children. Both grandpa's were recovering from physical ailments of their own which made the grandma's unavailable. Grandma Debbie ended up coming over to stay with the kids and help get them packed while our pastor and his wife made their way over to pick the kids up and take them to their house for however long.

We opted to take Haley to Seattle Children's Hospital. She was admitted that day. She had an MRI done that night and they told us Haley had a tumor in her femur that looked very much like cancer. She was able to have a biopsy the next day. The initial pathology report was not conclusive as to what type of cancer it was, but they could tell us it was indeed cancer. At this point we had not told Haley about the cancer. We didn't want to bring needless worry just in case it happened to be an unusual infection. But now we were faced with the unpleasant job of telling Haley what was really going on. We read her the story in Mark 4:36-39 of Jesus sleeping in the bottom of the boat, resting his head on a cushion. Meanwhile, his disciples thought they were going to die because of the fierceness of the storm. They wake Jesus up and Jesus rebuked the wind and told the waves to be still and then all was calm. We, like the disciples, found ourselves in a boat with a fierce storm all around us. But we chose to go below and rest our heads on the cushion with Jesus! He is in control and we trust Him!

They let Haley go home Tuesday, March 17th. She was in quite a bit of pain from the biopsy and was nervous about having her siblings around. After making a tape barrier we welcomed the other children home that same night. I was very careful what I fed Haley. I did not want to feed the cancer. So ALL processed sugar was out as well as refined foods and breads. I began to re-explore the different protocols I had learned about that past year. We began to give Haley different supplements to help strengthen her immune system and kill the cancer. And of course, we began to petition the Creator of Haley's for a miracle. God has made our bodies so wonderful. If we give them what they need they will heal themselves. The tricky part is figuring out what they need.

March 20th Haley, Grandma Jan, Hans and I headed once again to Seattle to meet with the oncologist to get the final pathology results. The other children spent the day with a dear friend of mine. The oncologist told us that the pathology report came back and Haley was diagnosed with osteosarcoma. Osteosarcoma makes up only 3% of all childhood cancers. Their treatment plan would be giving Haley 10 weeks of chemo, then surgery to remove her bone, followed by another 18 weeks of chemo. When I asked the dr what caused this and if there was anything we could do to prevent it from coming back, his answer was, "it's just a fluke thing, and there is nothing (outside of their treatment plan) that we could do to prevent it from coming back."