Home for a week…
by erin ~ May 19th, 2009. Filed under: The Journey.Well , after three long months we were finally able to bring her home for a much needed break. We got the word at the last minute that we could bring her home and so we jumped at the opportunity. She was able to come home on Friday, May 8th. I had all four of my kids, in my home, on Mother’s Day. It was the best Day I had in a long time. Holly’s blood counts were very low, so we were in whats called ‘isolation’ which means she shouldn’t be out in public because her immune system just didn’t exist. Well after being home for a few days we had her blood counts checked again and they more than tripled which means we were out of isolation and she was able to visit with friends, family and even go to school for a bit. I, of course , made her wear a mask when we went to visit her classroom.
Her classmates were so excited to see her and they were so sensitive to her. I was so impressed with Mrs. Hewitt’s 4th grade class. All the kids are so polite and very thoughtful. Holly is very lucky to have such awesome friends.
While we were home we got to visit with lots of friends and family. We were also able to celebrate Dean’s birthday too! We stayed home for about 10 days. It was great.
We got the news back on her bone marrow while we were in Ketchikan and it looks like she is not in remission. She is very close to not being in remission, but we are doing another month of chemo. We will repeat the last month of chemo this month. I was also told today that we might not do a whole month of chemo because she was so close to being in remission that we will check her bone marrow in about 3 weeks and if she is in remission then we will move right into transplant.
I am so scared for her transplant to happen. When we went to the SCCA (Seattle Cancer Care Alliance) for her consultation appointment it was very overwhelming. The consultation lasted for about 3 hours. The SCCA will be caring for Holly during her transplant. She will be admitted in to Children’s Hospital during this time, but will be under the care of the SCCA doctors. WHen Holly gets admitted into the hospital they will have to do what is called ‘Conditioning’ which basically means they want to kill all of Holly’s cells, so she basically doesn’t have any .. that way when Lily’s marrow is given to her it will be like a new beginning for Holly’s cells. And hopefully Holly’s body will start to make new healthy cells! The conditioning week will last for 7 days. She will receive total body radiation twice a day for 4 days and then 3 days of high doses of chemo…then on day 8 Lily will have a 2 -1/2 hour long surgery to remove her marrow and then after surgery they will literally put into a bag and give it to Holly that afternoon. …. CRAZY .. I tell you. This whole process is just mind boggling. After the marrow is administered she will then be observed for at least 100 days. After the first 30-35 days she will probably get discharged from the hospital to come back to the Ronald McDonald House.
Anyway , lots of information in such short amount of time. The side effects of just the radiation alone are hard to intake. Holly could possible develop another cancer just due to the radiation!!!, but the doctors say that with this transplant she has a 70% chance that the cancer will not come back! Once her 100 days of observation are over we should be able to bring her home for good. She will not be able to attend school till a year from her transplant date. She was very bummed about that, but I told her once she gets a clean bill of health she can get a puppy. She has decided she wants a German Shepherd .. so she will have a year off of going to school so she can housetrain her puppy .. she was very excited about that. If you know of anyone who breeds these dogs that would awesome to find while we are down here. She also doesn’t want to fly home she wants to take the ferry. I am hoping with dividends this year to trade my car in for a minivan ,so when we drive home with our new puppy we have more room!! ;0)
Anyway, I just wanted to say thank you again to the whole community and even those not living in the community. The amount of support we have been receiving is so amazing! I also wanted to say thank you to Gateway Mental Health for their package. Callisto Clinics for the wonderful goodies they sent. Holy Name School for the beautiful pictures! And Pat Stack for putting together a fundraiser for her. I also was asked when I was home if a band could do a benefit concert for her and we were so excited and accepted. The concert will be on June 19th at the Kayhi Auditorium, so if you can go .. I heard the band is awesome! Thanks so much everyone for all the prayers, mail, and support .. we couldn’t do without all of you!!!
May 20th, 2009 at 3:36 am
It was so great to see Holly-Girl!!! I just want to say she is the sweetest girl I have ever known in my whole life! We walked in to say hi to her at her house and first thing I noticed was how tall she had gotten, and I told her that, she was so sweet, she said thank you, I loved hugging her! I wish we could’ve seen her more that’s for sure. Celebration time when she gets back for good that’s for sure. She wants some hamburger pie for her homecoming! I will get Erin’s recipe for that and make it for her, unless she wants something else!!! Love you sweet girl! Auntie Karen
p.s. Erin you forgot to get your haircut!! Next time! Or for sure we’ll see you guys when we come down there to celebrate Nick’s 21st Birthday! Love you all……
May 20th, 2009 at 2:20 pm
It was so great to see Holly and be able to hold her. She has matured so much since all of this. The one frustrating thing is that it would be so COOL to have a BIG party for Holly, Erin and Lily when they come home but because of the risk of infection (to Holly) we can’t do it-I guess if she wore a mask but……
I am so proud of all of you–you are definitely strong women!
I LOVE YOU ALL!!!!!
G-ma Mimi/Ma
May 23rd, 2009 at 4:07 pm
Hi Beautiful Lil’ Songbird Holly Girl, Erin & Family,
I can’t express how much ya’ll have inspired me and so many others.
WOW, since the 1st. lil’ lyrics you sang with your MiMi, you became my lil’ Songbird. Boy, did you ever live up to that. Your voice and the CD are awesome – thank you!! That is one of my favs. by John Mayer. I am an American Idol fan and am amazed at all the young ones with so much talent who haven’t even had any training. I think the age group is 16 – 28. So, who knows, Holly & Erin – ya’ll might pack that mini van up to go for tryouts, somewhere, one day
Adi comes in from her race on POW tomorrow and don’t know if she heard it yet. Can’t wait to listen to it with her. We’re going have an iron off on our bags, finally:)
We both are so happy that ya’ll got to come home, even if it was too short. I know ya’ll brought smiles to many and that was some “good medicine” for you!! And Erin, I can only imagine what a wonderful “Mother’s Day” for you and your mom. Bless your hearts!!
Holly, hope the hats worked out – there still wern’t many to choose from, but from the pics. looks like mom likes hats too. Adi and I both have a hat thing
One of the most precious gifts that one can bestow upon another is “gentle encouragement”.
Where there is doubt, let there be faith.
Where there is despair, let there be hope.
Where there is darkness, let there be light.
Where there is sadness, let there be joy.
Just wanted ya’ll to know that all are always in thoughts and prayers,
Cherry
XOXO
P.S. The 1st. time I listened to the CD, there was an option to buy – now I can’t seem to find it. So, if there’s something I’m not doing right, please let us know when you can. Many thanks again for sharing such courage and beauty.
May 26th, 2009 at 2:34 pm
Hi guys,
Thank you for giving me such a lift the other day. To see you all together made me feel warm inside. I am so glad that Holly got to come home for a few days, I’m sure she brought the sun to Ketchikan. Have you decided on a girl or boy dog? What about a name, Fido, Harold, Buddy or Spot. See Spot lick Holly’s face and give big sloppy kisses. You will have great fun teaching your puppy, right now I’m trying to teach Zeus to close his eyes for a treat hmmmm, I think it’s going to take a while.
Much Love
Auntie Laura
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