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BABY DONOVAN
WELCOME TO DONOVAN'S SPECIAL WEB SITE!
Donovan Reed Rasmussen
Born: 12-9-2004
Angel January 20th 2007 Weight: 7lbs 6 oz Length: 20.5 inches Our beautiful baby boy Donovan was born December 9th, one day before his scheduled arrival. He arrived with a great tan and lots of brown hair. 4 weeks later Donovan was rushed to Riley hospital for Children in Indianapolis, Indiana and was diagnosed with Infant A.L.L. (Acute Lymphoblastic Leukemia) on January 16th (although it took a few days to confirm).
That week I will never forget.
I was still on maternity leave and enjoying a brand new baby when I started to see little bruises on Donovan�s little legs. I thought that was really strange. I thought to my self ,"where on earth did he get those". I then started seeing other oddities. His nose was bleeding; his eye had a big bloody mark like someone had scratched him. We dismissed all these things because he was doing so well. We thought Dylan scratched him out of curiosity with his eyes. We thought his bloody nose was because we had all had a cold and it was so dry outside. So we turned on the humidifier to get some moisture into the air. But the bruising started to spread.
The first time I called the Doctor the bruising was only on his legs. So the doc said it probably wasn�t anything to worry about and to call him if it spread, that was on a Saturday. By Sunday night his nose started to bleed and the bruising spread. I don�t know about all of you reading this but I have never seen a tiny baby ever have a bloody nose or severe bruising. He had little bruising all over his head and a couple of spots on his belly. By Monday I began to notice that Donovan's bruising was getting worse; the spots were getting darker in color. But I didn�t call the doc. (I was so scared for my newborn baby)
I knew something was terribly wrong and I couldn�t face it.
So Tuesday morning my mom, Dylan, Donovan and I went to the mall to play at the playground because it was too cold and snowy to play outside. My mom and I looked at each other and at Donovan and thought something was terribly wrong. I picked up the phone immediately and called the doc. We went in to see the doc all of us including Darren. The doctor thought Donovan looked great in terms of his weight and growth, but it would take that dreaded blood work to see what was making our precious baby sick. So the doc ordered a CBC at the nearby hospital.
I got the call about one and half hours later.
Something was really wrong
Donovan could possibly have Leukemia.
Leukemia? CANCER? A Baby?
I didn�t know that was possible
He was so tiny, so vulnerable, and none of us had any clue as to what was about to happen to him
His blood levels were really off. His platelets were 8 and normally they should be over 100,000.His white Blood count was over 675,000 and normally is supposed to be 5-15 and his hemoglobin was 5 and normal is 10.5-15. By the time we got to riley His white blood cell count was over a million. Yes a million At that point our entire families lives were about to seriously change as well.
WE were told to get the Riley outpatient Clinic ASAP. Donovan spent 6 and half weeks inpatient undergoing extremely high doses of chemotherapy and surgery after surgery. During my delivery with Donovan I started showing signs of puliminary ventricular contractions or PVC's. I was seen by a cardiologist and it was found that there was something causing my heart to make these irregular beats. The first week Donovan was inpatient for Infant Leukemia I was taken to a nearby hospital to be checked over and over again for these PVC's. I wore a heart monitor for two days while caring for Donovan. I was given stress echos, and a procedure called a cardiac cath. I kept thinking, " I am on maternity leace and I am supposed to be enjoying the new life of my baby. What is HAPPENING"? I was put into the day hospital during this procedure. All I could think of was that I needed to get back to my baby suffering and in pain and wanting his mommy. Due to side effects from the anastesia, I wasnt able to leave as quickly as possible.. It turns out that I have an irregualr left ventricle in the back of my heart that I have probably lived with my entire life.. MY cardiologist said that it wouldnt kill me and that I had all the testing I needed for the rest of my life...What a relief. Because Donovans treatment went on for 7 months. 7 months Donovan stayed in remission.
Well I wish that was the end of the story and Donovan and our family lived happily ever after.
Donovan sadly relapsed in his bone marrow, blood and CNS(brain) August 16th 2005 during the most intensive phase of his 33 month chemotherapy protocol.
The hope then was to get him back into remission. The next step would to have a Cord Blood Transplant and this would be the only option to save his life. Our family made a very difficult decision and left our home in Indianapolis, IN and traveled over 700 miles to Durham, North Carolina so that Donovan could have a cord blood transplant by the woman who had Pioneered it 15 years earlier, Dr Joanne Kurtzberg.
IT took Donovan two different chemotherapy trials to get him back into remission in which he suffered from SEVERE Bacterial infections and pneumonia, which we thought were going to hault his ability to get the transplant and another two months in the hospital.
Transplant was his only hope.
It took 8 weeks inpatient at Riley hospital to finally do the trick. Donovan was released Oct 10th 2005 and we were in North Carolina Oct 11th 2005 to start our intensive two-week testing and pre treatment for his transplant. A transplant doesn't work for Leukemia if the patient isn't in remission. So Technically Donovan relapsed 2 times before we got to Duke University.
While we were at Duke Donovan had sadly relapsed again for the 3rd time. Given Dr Kurtzbergs experience she gave him more chemo for five straight days and that put him back into remission and Donovan had a cord blood transplant on Nov 10th 2005.
In April 2006 barely over 3 months later Donovan had an isolated relapse in his testical with leukemia. Donovan underwent surgery to remove his testical in hopes that we got it all. Due to the relapse, his odds were so much greater to relapse again. During the first three months post transplant Donovan had to have surgery for a Gtube because he couldnt eat due to all the side effects of the chemotherapy and anti rejection drugs a Gtube was put in along with his stomach being wrapped for his severe reflux problems this is called a Nissen surgery. He also suffered from a Pericardial effusion in which the Drs put in a catheter to remove fluid from around his heart.
Given all this he continues to be stable, develop, be happy, and do well.
I cant believe I am still writing his story and he is only 19 months old. Unfortunately Donovans story doesnt end here.. Donovan sadly relapsed again after 9 months post cord blood transplant August 17th 2006. DOnovan had 96,000 White blood cell and 96% blasts in his bone marrow, blood and CNS again. We also noticed a mass or tumor on the roof of his mouth called a chloroma. We dont know what the next step will be but we are ready to fight.
Darren and I agreed to go ahead with the very intensive chemotherapy and radiation with second transplant route for our precious DONOVAN. This will be his chance to beat the odds for the last time.
Donovan was inpatient again for another 2 months for his second transplant. He went through 14 rounds of radiation to his brain, whole body and extra to his brain and mouth, and testical. Needless to say Donovan's story continues and the odds just keep piling up on him. His second transplant has failed. This will be our last leg of his incredible 2 year journey. Dr K has proposed that we treat him with a couple different chemotherapies that are usually used in kids with brain tumors but has shown some good results in resistant ALL patients..THis course of action that we thought would help has not and our precious boy is now awaiting his unfortunate destiny of becoming a sweet angel in heaven.
Our family is heartborken to say the least but have the faith and hope that Donovan will prevail one way or another. Please pray with our family that Donovan will remain comfortable and not have to suffer.
Please continue to pray for our special baby Boy.
BabyDonovan our precious teddy bear earned his angel wings at 8:20pm January 20th 2007.
Please feel free to sign the guest book. we LOVE seeing your messages! It's always nice to know there's someone out there thinking of him and all of us.
He's My Son
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See, there is a boy that needs your help
I've done all that I can do myself
His mother is tired, I'm sure you can understand
Each night as he sleeps, She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can you hear me? Am I getting through tonight?
Can you see him?
Can you make him feel all right?
If you can hear me
Let me take his place somehow
See, he's not just anyone, he's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God, who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's tired
And he's scared
Let him know that You're there
Can you hear me?
Can you see him?
Please don't leave him
He's my son.
Journal
Sunday, December 28, 2008 7:11 PM CST Ok so I thought I was going to make it through Christmas without tears, pain, and a broken heart but I was way too confident.
I came down with what a dear friend of mine calls the " I am missing my baby in heaven BLUES"!!! Ugh..
Gosh all I could think about was being alone without my family. Everything seems so broken..How could this happen?
But I wouldnt be "melissa" if I didnt find the silver lining in my dark clouds...
I spent a great couple of days in one of my favorite little places in California, Santa Barbara!!! LOVE IT THERE!!! It can cure all broken hearts.
My very good friend and I took a cruise up the coast, through Santa Monica, Malibu, and then into Santa Barbara. I just love the quaint feel, the pretty landscape, the ocean, the little boutiques, and cafes. Its such a great place. I found a great little hotel that was a perfect little find right on the coast and so inexpensive.
I went for a run along the coast and then met my friend for some window shopping, and lunch and a movie. We had so much fun we stayed another night, saw another movie and had a great dinner at another perfect find Italian restaurant.. If anyone is singing the blues please come to Santa Barbara. Its stunning and soothing to even the most broken hearts.
My dear friend Vanessa introduced me to Santa Barbara by raising money for the Leukemia and lymphoma Society team in training in memory of Donovan. Ever since we ran that half marathon together I have wanted to go back...Its truly an amazying place.
In the end, my heart is still broken but I can wake up in the morning and breathe without tears.
December and January are hard months and I am trying to do what I can to not be so sad...
Cheers to all my dear friends, may God bless each and everyone of you with many blessings this holiday season and New Year
Melissa
Read Journal History
Hospital Information: Patient Room: Apartment sweet apartment Alexan Farms
600 1F Ivy Meadow Lane
Durham, NC 27707
317-332-0251
Links: http://www.cmn.org/JoaneK.php THIS IS OUR DOCTOR we are so proud of her...Yeah Dr K
http://www.bracelets-of-hope.org Great site for beautiful bracelets to let your friends know you care
http://www.curesearch.org Help make a Difference
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