The Blaines

The Blaines
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Buggin' For a Cure

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Thursday, February 21, 2013

Prayer, Praise, and Pineoblastoma

We sat anxiously waiting for 3:00 to roll around Monday afternoon.  That was when we were told the oncologist would be there to talk to us.
10:00
The morning was filled with a visit from the OT, and then our sweet nurse and OT did everything in their power to get Ellie hooked up to a mobile monitor so she could go to "school".   Sweet girl got to ride in her special seat with her two poles attached down to the classroom.  She enjoyed playing with baby dolls and made a penny for president's day.  When we went to pick her up she was playing a board game with two other boys, what fun!

12:00
Once we got back we were told we were getting a roommate ...umm can you say panic?!?!  Its one thing if my two year old wants to wake up at 3 and have a dance party, but with someone else in the room, plus then the whole "one parent can spend the night" rule goes into effect with a roommate.
1:00
While enjoying my salad and attempting not to panic at our new situation, and not pay attention to the time, the charge nurse came in to tell us they had found us a private room...pack it up! I made no attempt to help pack, I hopped in bed with Ellie and let the packing master take charge.
2:00
In our new room...one hour to go...pacing, Richard finding great Bible verses...Ellie entertaining us...every knock at the door makes us jump

3:10
Oncologist arrives.  At some point I think I left my body, I was physically still there, but it was like I was watching someone else have this conversation.  Then he said it, the mass inside Ellie's head is a Pineoblastoma, which is a rare malignant brain tumor.  At this point my brain went blank, all I heard was "You were chosen"...obviously not from the oncologist.

 I'll let Richard explain...

Pineoblastoma - A rare malignant brain tumor, may also be called a rare brain cancer. Childhood pineoblastomas represent less than 2% of all childhood and adult brain tumors.Of course we asked the question if our other children have any increased risk of being diagnosed with this tumor, we were assured there was no increased risk. Since it is a rare tumor there aren't too many exacts about why people get them, but so far there isn't anything to suggest any genetic pass-down.

Starting in the next few weeks Ellie will begin a treatment called "High Dose Chemotherapy with Autologus Stem Cell Rescue", in the Oncologists words "an aggressive treatment" at the DC Children's Hospital. Typical treatment would also include radiation, but radiation is not an appropriate treatment for children so young. Ellie's treatment will come through a series of different steps. A bone marrow stem cell harvest will be one of the first steps. Some of Ellie's bone marrow will be removed and frozen to use later after chemotherapy. Next Ellie begins her chemo treatment consisting of a few doses of chemotherapy over the next few months. Following her chemo the frozen marrow will be thawed and reintroduced into her body (aka Stem Cell Rescue). The "new" marrow will help Ellie in the healing process because it will not have been exposed to her chemotherapy treatments.

Beyond that, we don't know.

(Isn't he so good at explaining things!  He's been so good at researching and reading.  I try to read things but I get overwhelmed, so I stop.  He's the researcher, I'm the appointment scheduler)  I recently also found out that my coworkers donated a tremendous amount of sick leave to me, so that I can be by Ellie's side, and not have to stress that financial burden.

Once everyone left and Ellie returned from her MRI, Richard and I lay there our lives forever changed. What do you talk about, what do you say when your world has completely flipped itself?  Do you share all the scary thoughts in your head?  We cried, then talked, cried some more, talked some more.  Kinda hard to console one another when one of you is laying in the hospital bed and the other on the chair, but I'm so thankful it was in a private room, I couldn't imagine having to do that with a roommate.

The next morning we were greeted bright and early by one of our oncology friends to let us know everything looked good and we would most likely be going home that day.  As I was getting dressed in the bathroom (the one in our room...yeah!) I was listening to Richard sing to Ellie the "Hey Baby" song that this stuffed dog sings that drove me crazy the first couple of days, but now is a delight to hear because Ellie loves to sing it too.  It's even better to watch Richard dance to!  I laughed to myself and then once again the Lord spoke to me and said "WE are going to get through this".  I don't think I have ever heard Him speak more loudly and clearly to me

We have promised each other we will do this one day at a time.  We cannot worry about what will happen when the baby gets here, we cannot worry about long trips to DC, we can't worry about finances. What we have decided as husband and wife, as mother and father, and as servants to the Lord is to continue our walk strong and keep our focus on the following (again Richard's handy work, he's amazing):

Jeremiah 29:11 "For I know the thoughts that I think towards you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end"
Mathew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" "
Philippians 4:11 "I am not saying this because I am in need, for I have learned to be content whatever the circumstances"
1 Corinthians 10:31 "So whether you eat or drink or whatever you do, do it all for the glory of God"

We know that Ellie was chosen by God a long time ago to go through this. 

As her parents we were also chosen, we have been given a privilege, and it is a true blessing. We want God to get everything he deserves out of this. While we would certainly love a miracle and for doctors to be baffled by a tumor that just disappeared, but if that's not God's will, if that not what is going to bring Him the most glory, we're o.k. with that. All we can do is focus on today, the blessings we have been given today, the smiles we have today.

Noah did great during the time of Ellie's surgeries. We did the best we could to explain what happened. But going forward, we are still searching for a way to explain all this to Noah. It's hard to tell what he takes in. When mom and dad are away, when he sees Ellie sick, when he's not allowed to see her, when there's a new baby in the house. Please pray for clarity and understanding for him and that we are able to play whatever part necessary to support him.

We thank you for your continued Prayers, Praise and Pink.  We love seeing all the pictures and hearing all the words of encouragement, you help us get through each day.

A month ago I reminded a friend of this song, I can't think of a more appropriate song at this time.


~Richard and Carly


14 comments:

Uncle Wane said...

Richard and Carly, Thank you so much for your testimony. Your right God has chosen you for a reason. You all have touched so many people already and am sure many more Will be through this journey. Ellie has amazed me through everything. I know its Gods hand on her. Just know whatever you guys are going through, you are not going through it alone. We love you and are here for you.

Tammy smart and Europe said...

Your both are an inspiration to all parents out there.....she will make it through with all the love and prayers from everyone......:)...

Mark Carlson said...

Carly and Richard. Michele and I (mark)are moved to tears. Having seen dear loved ones fight cancer we know that your road ahead is one that will be trying.We also know that your faith and the community around you will see you through all this and more. All our prayers.

Tina Harlow said...

Hi there Carly: I can't stop my tears from falling! My heart goes out to all of you and I'd like to share that our son, Dalton, was sick as a small child, 2 urinary surgeries between the ages of 18 mos and 4 yrs old and then found only one of his kidneys functioned and was told for years he would need to have the "small" kidney removed. After praying faithfully for 13 years we received our answer that God is the true healer and Dalton can keep his "small" kidney and the other one compensates for it. Having Faith is the most important thing you can do and to understand that God answers prayers in His time, not ours. Of course this story is nothing compared to yours but I admire your strong Faith and Love for your children and our Amazing God! what a Blessing all of you are to Zion and all of us! We will continue to pray and please let us know if you need anything at all. ((hugs)) Tina and E.L. and Dalton H.

Anonymous said...

Praying for your sweet baby, her brother, new baby and you and your husband. HE is our healer, HE is Ellie's healer. Rest in the knowledge that HE has this under control and HE wants your baby well. It is ALWAYS his will to heal.

Becky

Sherrie said...

Prayers to you all...thank you for sharing your story. Your faith is so strong and an AMAZING inspiration! God is good! Thank you for being the chosen ones to remind us all what faith really looks like.! Faith can move mountains!! xoxo

Second Mile Ministry said...

1 Peter 5:10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

Anonymous said...

Everyday that I have read your blogs and shared them with my mom (Barbara Seale) have moved me to tears and smiles..you and Richard are such a inspiration to me..you guys are in our thoughts and prayers!! Tell little Ms. Ellie that I miss her in nursery, and can't wait to have her back!! We love you guys!! Barbara & Wayne Seale, Kelly, Tommy, Derrick, Emily,Tyler, and Jacob Lillard

Soosan said...

God bless you all. I will be praying for you. I understand the feeling you had of we will get through this. I had the same feeling after my daughter was diagnosed. She has a different blastoma that is below her kidneys. She too underwent stem cell rescue.

The best advice I received to help her was to slather her rear end with butt cream with every diaper change and use the thick wipes to clean as best we could. This helped keep sores from appearing on her bottom.

Unfortunately Jesse was 2 at the time, and I was not successful with the magic mouth wash to keep the sores out of her mouth and throat. The DC oncology nurses might have some tricks for that. Don't be scared of morphine (I was at first, but it was such a help to her during the pain).

Anonymous said...

I am praying for Ellie, and that God will continue to comfort and give you and Richard strength through this trial. You are true examples to us all. Sharing your experience publicly as you are, is a true witness and testimony to others. I believe you are reaching many lost or maybe just discouraged souls with your story.... God has a plan , and your beautiful little princess has an important role in it!

Nurse Amy said...

What beautifully written words. It is a testimony of such faith and love of Christ. Your little girl is such a blessing. Prayers are lifted for you and for continued strength. Thank you for sharing.

Anonymous said...

Praying for Ellie and that God gives her parents and family strength and peace. I have a great niece who had leukemia at about the same age. She's 31 now and just passed the Virginia Bar exam.

Bellablue said...

St Jude has a protocol called SJMB03 please look into it for Ellie a second opinion is free from them. Also there is a pediatric pineoblastoma group on Facebook.
My name is Angelia my son was diagnosed with a different tumor type but my best friends son had Pineo so I follow ::: my sons site is NickyBear.com


Tabatha E. Doyle, RN Coordinator -Brain Tumor Coordinator
Brain Tumor Program St Jude Children's Research Hospital
Room C-6058/MS260
262 Danny Thomas Place
Memphis, TN 38105
Office: 901-595-2544 Fax: 901-595-5353
Email: tabatha.doyle@stjude.org
Website: www.stjude.org/brain-tumors

Anonymous said...

We find out tomorrow if this is the same tumor that is growing in my God daughters brain. I will be starting a blog for her as well as we journey this road. She is having her surgery tomorrow at noon.

We are so scared and praying and praying. I will be bookmarking your blog and will be back.

Praying for your sweet little one too.

Thank you for sharing as well. I'm up late tonight scouring the web for information on this tumor and cancer.

Our little girl has just turned 3 this month.