Well, I can’t believe we are here already, but it has been 6 months since Holly’s Bone Marrow Transplant.  We are leaving on Thursday to head to Seattle for her Friday appointments.  She will have cat scans done and meet with the doctor.  I am very excited to see how she is doing.

Her strength has slowly been coming back, but she is doing fantastic.  We arrived back to Ketchikan safely and were home only for a couple of weeks and she came down with shingles.  She ended up being in the hospital for over a week and was able to get out just before Christmas.  We had a very quiet Christmas and an even more quieter New Years.  There was such peace to put 2009 behind us!  You have no idea!!!

Matt and I are back to work.  Dean and Lily are back to school.  Holly is home-schooling and helping take care of Sean.  Things have been …. well … normal.  I apologize for not getting on here since we got home, but it seems there are not enough hours in the day to get all that I want done.  I will for sure put a post up after we get back from Seattle.  I hope all is well for you and yours and I truly hope 2010 brings tons of laughter and peace.

Love to all

The Haines/Caskey Crew

I can’t believe we have finally reached Day 100.  Way to go, Holly!  She is doing great.  All of her tests so far are turning out to be negative for Graft Versus Host Disease (GVHD).  I took a Long Term Care Class yesterday.  I am very nervous about leaving our ’security blanket’ – Seattle Cancer Care Alliance and knowing I am going to be her advocate for her health.  I told the nurse yesterday I felt as if we were graduating from high school and they were sending us off to college.  ;0)  She laughed and said maybe we should order caps and gowns.

The kids are excited to be coming home.   It will be so good to see friends when get home.  I do miss seeing a familiar faces.

I meet with a transfusion team on Friday to discuss all of Holly’s blood transfusions and then I will meet with the doctor and nurse staff to go over a summary of Holly’s tests and the plan for the next year.  Tuesday will be a big day for Holly.  The doctors have agreed to have her Hick-Man Line removed before we go home.  I am excited about the removal just due to the fact her risk for infection will be lower.  She is not excited about it because now they will have to use her arm for blood draws. :0(  Tuesday will also be her last clinic visit.

We are going to spend Thanksgiving with my brother and his family.  It will be so nice to have a holiday with my nieces and my nephew.  I am going to miss having my family so close.  We all are very sad about leaving our family down here and not being able to drive over to see them when we want!  Despite our year down here .. that has been a real treat for us and we are gonna miss that luxury.

Until then .. I am not sure if this will be my last time writing on here.  We have begun packing up the apartment.  Amazing all the stuff you collect during a year.  I didn’t think we had very much stuff down here, but we do.  ;0)  I will try and write on here before we pack the computer up, but if not we will see you in Ketchikan.  Thank you to all who check in on us thru this website, thank you to my good friend Robin for creating this website … and most importantly thanks for all the love, support and prayers we have received.  We are so BLESSED.

Much Love

Haines/Caskey Crew

Holly is cancer free!  We just got the news on Friday from her bone marrow tests and she is still in remission!  AMEN!  Thank you all for your prayers and words of encouragement.  This has been the longest year I can ever remember.  Holly’s strength has empowered me to know there is no mountain to high to climb and no battle we can’t fight.  Holly and I came home from the hospital after receiving the news and gave Lillian the biggest hug ever!  Goose bumps still surge thru my body when I think about a 4 year old sister saving her sister’s life .. a true HERO she is and always will be.

We wouldn’t have been able to make it thru this year without all the love and support we have received from friends, family and strangers.  And most importantly God.  I am speechless on what to say.  Thanks just doesn’t seem enough.  This year we have learned so much about life, relationships and the important meaning of family!  My heart has been touched by so many people I will always have tremendous gratitude for the help, love, prayers and support we have received.

Thank you from the bottom of my heart.

Now … let’s celebrate … my baby is CANCER-FREE!  THANK GOD!

God Bless and Much Love

The Haines/Caskey Crew

Holly was admitted into the hospital on Thursday due to a fever of 101.5.  She broke the fever once we were admitted into our room.  When Holly has a fever over 101 it is an automatic admission for 48 into the hospital.  We were hoping to get discharged on Saturday for Halloween, but her fever came back Saturday morning.  So, we had to stay in for at least another day.  Every time Holly has a fever they draw blood cultures to search for an infection.  By Sunday one of Holly’s cultures grew and it looks like due to her Hick-Man Line she has a blood infection.  Basically anytime a person has a line in their body they pose a high risk of infection due to bacteria and germs getting into their body thru their line.  The doctors had to do a few more blood tests because the blood cultures tested for a wide variety of bacteria so they did a more specific blood test to decide which antibiotic to use to treat her.  The doctors have agreed on an antibiotic and they gave it to her last night and kept her overnite to make sure she didn’t react to the new drug.  Holly did fine with the new anitbiotic and she is getting discharged today … YEAH!

Due to her being in the hospital, all the Day 80 tests that were scheduled got put on hold until next week.  So, with that being said we will be a week behind.  Holly is still going to have her bone marrow test on Thursday, so please say lots of prayers.  I am not sure now when we will get the results of the test, but  I will be sure to post as soon as we know.

Matt is still looking for a job.  He has a few leads and we are excited about them.  We also haven’t found a new place to live yet.  I honestly can’t think about any of that right now, I am so nervous about Holly’s bone marrow test.  I just hope I can keep it together.

Well, I hope everyone had a safe and happy Halloween!  We miss you all so much.

Much love

Caskey / Haines Crew

Well, today we had clinic and it looks like we have a scheduled consult on November 10 for Holly’s test results.  Next week we will have a busy week of testing.  Her final bone marrow is scheduled for the 5th of November.  I was noticing when I wrote the date as the title for this post that the numbers descend .. hmm .. interesting.

Happy Halloween to everyone.  We sure are going to miss our Halloweens on Jackson Street.

Holly is going to be a go-go girl, Dean an army man, Lillian a princess and Sean is going to be Superman.  We miss you all and can’t wait to come home.

Hugs

Caskey-Haines Crew

Well, it is hard to believe we are 5 days away from Day 80!  Day 80 is an important part of Holly’s healing process because this is when we test to see if her cancer has returned and we also look at her from head to toe to see if Graft Versus Host Disease is anywhere else.  We will also look at her GVHD that she had in the hospital back in August and see if it is manageable.  If, that is ‘if’ Holly does well in her bone marrow test and all these GVHD tests we have been given the ‘unofficial’ discharge date of November 17th…. SO … the week of November 5th Holly will be tested for everything under the sun .. from her eyes to her joints, etc .. November 5th will be a bone marrow biopsy.  The week after November 5th I will sit down with the doctors for all the test results .. which they call ‘Day 80 work-up’.  If Holly’s tests go well we will be home around November 17th , if they need to monitor her GVHD we might have to stay for a few weeks to a few months.  We will find out after November 5th when we will be officially home.

Holly has not been feeling the greatest which is so sad to me.  I am just so anxious for her to be running around and being back to her bouncy self .. I guess I am just anxious.  She has been flirting with having a fever.  If she does get a f ever she will probably have to go back into the hospital .. which right now would not be a good thing because Children’s Hospital has just passed a new rule that NO VISITORS and NO SIBLINGS can be on the in-patient floor due to the H1-N1 virus.  So, hopefully we can stay out of the hospital!

Holly has been going to school still twice a week and loving her tutor.  She has almost finished her 2nd book in two weeks and is cruising through her math.  She seems to love the ‘normalcy’ of having homework.

Her hair is growing back too.  We are so curious what her hair color is going to be.  When she started to lose her hair it was turning my color of red and then she lost all of her hair.  But now it is growing in dark black/brown .. even her eyebrows were getting darker.  The doctors said some of the drugs she is on now have some to do with that, but we will see.  Her hair is growing in very fast .. which is making her very happy!

I wanted to say thank you to my ‘ I don’t know what I would do without’ friend, Kerry.  She has rescued me so many times during this year!  Her and her husband, Gregg have taken Adrian (Addie), Holly’s puppy into their home until we can get a new place to live.  Kerry keeps warning me that Gregg might not give Adrian back .. which you don’t know how happy that makes me … not because I want them to keep Adrian, but because it could be the complete opposite where they were wanting to get rid of her .. ;0) .. .. Kerry you are an amazing friend.  Thank you for all you do for me and my family.

I also wanted to thank Kitty, Gabe, Jacob, Pam, Dylan, Jens, Colleen, Tracy, and Shawn for there help today.  Also a big thanks to Dan Kelly and AML for helping us out in our time of need.

Well, I am beat tired and ready for bed.  I am sorry you haven’t had an update for awhile, but we have been so busy!  I am so nervous for the upcoming weeks, but so excited to actually be heading home … VERY SOON!!!

Much love .. and tons of hugs going to you and your family.

P.S.

- – - Colleen … Charlie Brown ROCKS!

So, it looks like we have a new problem.  My mom announced to me today that she is putting the house that we rent from her on the market and we will have to be out of our house by January! Yikes!  Another tidal wave to tackle.  So, I am putting this post up if anyone knows of a clean, spacious and will take animals place to rent.  Since, Matt doesn’t have a job yet I am not sure what we can afford, but if you hear of anything please email me at erinhaines@kpunet.net .  Thank you so much.  I don’t think I can handle any more bumps in the road.  The kids were pretty upset when I broke the news, but I told them we will find a better place to live.  We also have a trampoline.  I am pretty sure we will have to sell it, so if anyone is interested in it please email me too.  Thanks so much.  As this path has had many curves, God has been here for us and I am sure he will be here for us during this one too.

Much love

Erin, Matt and kids

Well, we have 17 days to go until we do a bone marrow test.

Holly is doing well.  She has had a cold/cough for awhile now which has been a pain when we are at the hospital, but other than that hasn’t slowed her down.  She is having to drink lots which she is finding difficult.  The doctors will probably up her I.V. fluids at home which means instead of carrying around her pump for 4 hours she will have to do it for 8 hours.  It stinks, but due to the meds she is on they are hard on her kidneys and her fluid intake has to be around 45 ounces a day .. and she is only able to get about 17 ounces a day.  Her appetite is also decreasing.  Not sure why, but we are going to clinic twice a week so they are keeping a close eye on her.  She is also getting counseling once a week at Children’s.  Holly’s moods come and go.  One minute we are happy – the next we are mad – and then we are shedding tears.  Yes, this year has definitely been an emotional roller coaster.

We are so excited to get home, but I am so nervous … nervous because we will be away from the hospital if anything happens.

Holly is continuing to meet with her tutor twice a week and loves her.  She has almost finished a book and is cruising along in her math.  She seems to be able to handle the load .. which doesnt surprise me.

Dean is still going to drum lessons once a week.  He has counseling every other week now and his schooling has been slowed down due to the fact he has a stuffy nose.  The Hutch school has a zero tolerance for any symptoms due to the fact that all of his classmates are siblings of bone marrow patients.  He has become my student now which somedays I am sure he would love to go back to school.

Lillian is frustrated all the time because she is so anxious to learn how to read.  All I ever hear .. please Mom teach me how to read.  I swear she is so funny.  She is feeling much better thanks to her antibiotics.

Sean is dancing away.  He talks our ears off.  “Oh, Man” , or “No”, and “I wantcha” … anything you say he repeats.  The other day in the car I said, ‘Holy Crap’ and a little echo in the back of the car … “Holy Cwap”  yeah we all had a laugh over that one.  He definitely helps keep us sane – that is for sure!

Matt is still looking for work.  We are sending every prayer up for that one.  His job in Seattle ends on the 1st.  Whew .. I hope something comes up.

As for me, I am hanging in there.  There is never a dull moment and rarely a moment to just sit and ‘veg’ out.  Soon, there will be a moment to breathe .. I hope.

Thank you for all the packages.  Lily got some mail for her birthday and loved the gifts.  Thank you – you know who you are!  I will  try and write more when I get a chance.  The week of October 30th say lots of prayers .. we will be looking at Holly inside and out to make sure we can go home.  The earliest we can arrive would be the middle of November.  We possibly could be home for Thanksgiving! ….

God Bless You All.

Love and Hugs

The Caskey/Haines Family

Hello everyone …

Just a quick note to give you all an update.  Holly is doing fantastic.  As the doctors said, ‘Holly is cruising right along!’  She ended up getting ‘our’ cold that we have all been passing around for the last month.  Unfortunately, she got it and now I have it…why is it Moms are always the last ones to get sick?  Matt ended up with bronchitis, Sean had the flu twice, Lily had an ear infection and touch of pneumonia and now us last survivors have a stuffy nose, sore throat and cough.  UGH!

Holly has been doing well with her fluids and hopefully in the next week we will be able to get her off of the home infusion of fluids.  Her apetite is back and she has been eating almost back to her normal self.  She started school last week , well she goes and meets with a tutor.  Her tutors name is Christie and Holly loves her!

Other than just being sick we have all been counting the days and praying we will be home by November!  Lily is excited because Saturday is her 5th birthday and let me tell you I am celebrating her this year.  Where would we be without Lily!

Today we experienced ‘Seattle’ rain and lets just say we were all very excited!  I had to chase and yell at the kids to put coats on.  Everyone wanted to run around in the rain they were so excited to see it downpour.  Crazy, huh.

I am going to go and make some tea and hop into a hot bath while Matt makes everyone dinner.  I hope this news finds you well.  We think and miss you all.

Hugs to you and yours.

God Bless.

Erin

Well, Holly got out of the hospital on Day +36.  We were so excited to have her come home.  It was a big adjustment for all of us.  Holly is taking almost 30 pills a day.  She also isn’t able to drink very much, so we are putting her on hydration.  Which means I have to administer the hydration at the apartment.  It is becoming more fun the more I do it.  At first I was horrified, but now I am getting the hang of it.  She had her first outpatient visit at the SCCA on Thursday and they were very pleased to see how she was doing.  I can’t remeber if in the last post I mentioned Holly tested positive for Graft Versus Host Disease (GVHD).  The GVHD is attacking her tummy which is why she had such a hard time eating and drinking.  The doctors have put her on some meds which are increasing her appetite by the day.  They schedule a full dosage and then start a taper.  While she is tapering off these drugs to control the GVHD the doctors will monitor her tummy and if she starts to flare up again and have issues eating she will then go back to the full dosage and then try to taper again.  I also learned in our outpatient visit that some patients possibly can go home before Day +100.  :0)  On Day +80 we will test her bone marrow again and take a look at her stomach.  If Holly is still in remission and her GVHD is managable then we will be able to get out of SEATTLE!  HOLY COW!  Keeping my fingers crossed for this one.  I also learned some bad news, that since Holly’s cancer was found in her bone marrow they will administer Methotrexate (chemo) into Holly’s spine 4 times in the next few weeks.  So, I thought we were officially done with chemo, but as I have learned on this journey is nothing is for certain.

Holly is doing well though.  She is very homesick and exhausted.  She can hardly sit still because we found out her puppy should be flying in on Saturday!  Thanks to my wonderful Aunt and Uncle .. Holly’s puppy will be housing at their house until we can officially go home.  It is going to be so hard for Holly to sleep away from Adrian (her puppy), but unfortunately we can’t have pets in the Ronald McDonald House.  Holly was able to purchase Adrian with the money Houghtaling students raised for her by selling chocolate milk.  So, thank you so much Houghtaling!  Our family feels so blessed to be apart of such a wonderful and supportive school!  Speaking of school, Holly will begin her tutoring at ‘The Hutch’ school this week.  She will have a tutor come to the Ronald McDonald House twice a week until Holly gets stronger.  Once Holly is stronger then she will go to the school and tutor there for 3 hours a day – 5 times a week.

Dean is loving school at ‘The Hutch’.  His first week there and he got to meet a professional baseball player off of the Seattle Mariners, Mike Sweeney (sp?).  Dean got tell Mike about our family and Dean said that Mike told him to hang in there. :0)  Dean was so excited.  Mike also brought back packs, a stuffed Mariners Moose and an autographed picture.  Dean asked Mike if he could get one for Holly and he did.  Dean is still doing his drum lessons.  He got invited to watch his teacher, Drew, perform with his band on Friday night.  Dean and I went alone… we had a ‘date’ night.  Every time I mentioned ‘date’ ..Dean would roll his eyes.  It was great.

Lillian – has been struggling with a cold.  Which bless her heart she has been trying so hard to stay away from Holly on her own.  She is so concerned for Holly’s health.  This morning though she woke me up because she had thrown up… this has been such an ‘eye-opener’ for me… having sick kids around Holly.  I found one day I was actually upset with the kids for being sick .. not meaning to, but it is so hard with Holly’s fragile immune system.  God Help Me get through this.  Lily actually slept in the bath tub because her and Holly share the bedroom together.  So, Lily fell asleep in the tub while I was putting her sheets into the washer which are in the bathroom.  When I got done putting the sheets in I realized she had fallen asleep.  I tried to wake her up, but she was out .. so I thought .. Hey this could work out .. and an hour later I found out it did… Lily got sick in the tub and all I had to do was wash the tub out with water.  She told me this morning that she had fun sleeping in the tub.  She is so easy to please.  She is also feeling better now.. let’s keep our fingers crossed.

Sean – is definitely turning 2!  He has no understanding of the word ‘No’ when we say, but when he says it .. you had better listen.  I don’t think he ever sits down.  He just goes and goes all day long.  Bedtime with him is so easy … thank goodness.  He just plum wears himself out!  Everyday he has tons of new words and sayings.  He is hilarious.

Matt and I are just happy to have all the kids in the house at the same time.  We have definitely learned that we work very well as a team.  Juggling these kids, appointments … and always the unexpected!

My cousin Lauren came down to Seattle and we were able to see her one night.  She and her friend took Holly out and got her a gift.  Holly had a blast with Lauren.  It was so nice to see a friendly face!

We are trying to figure out what to do for Lily’s birthday.  She will be 5 on October 3rd.  She really wants to go to The Great Wolf Lodge for a night or two.  Matt and I are hoping dividends are good so we can make that happen for her.  It is going to be so weird to be here for her birthday …. AND Halloween.  It just won’t be the same without our Jackson Street Halloween.  Matt and I are talking about trying to go to the Great Wolf Lodge for Lily’s birthday and for Halloween … we’ll see.

We are all so homesick!!  We miss the rain!!  Dean told me the other night he missed the Ketchikan McDonalds …. how sad is that.  ;0)  Anyway, much love from all of us.  Hugs.  I will let you know more when we know more.

God Bless

Erin