Thursday, December 1, 2011

Amazing News!

‎1st surgery was a success! They removed a large (almost baseball size) tumor from Mallorys left side, there were absolutely NO complications, no blood transfusions and our sweet peanut is resting in her Daddy's arms as we speak. God is GREAT! He was certainty listening to all of our prayers today. We are still in for a long fight, but this 1st surgery has given us so much hope for our beautiful baby girl. You all have been so supportive and encouraging, please continue to keep us in your prayers as this is the 1st step in a long process to heal our beautiful baby.

We are praying that the bone scan, the bone marrow biopsy to come out cancer free. Next week they will be doing another test on the rest to make sure the cancer isn't anywhere else in her body. That is a very special test and we will explain it more as we get more information about it.

Tonight I will be hanging up pictures, some quotes we have already gotten and we are going to deck this Hospital Room out. It is our home away from home right now. We are so blessed to be surrounded by the best doctors, nurses, and staff. They have treated us like family and we will be forever grateful for them.

Step 1 complete.

Just talked to the surgeon; it went perfectly. No complications. This is the best possible outcome!

Tonight we rejoice, but tomorrow we continue onto the next stage.

Clinical Trials

We were sitting around the hospital room earlier today, Mallory was being a champ. She slept most of the day, even though we were not able to feed her after 4 AM. She had her moments in the morning, but then she just slept all afternoon.

In the early afternoon, a gentleman walked in the room and introduced himself. He is Spectrum Health Research Technician. His came up to us to talk about entering Mallory into a clinical research program.

Helen DeVos Children's Hospital is part of Spectrum Health. Spectrum Health is part of the Clinical Oncology Group, which is a consortium of hospitals around the United States. St Jude's is a COG hospital, and so is Helen DeVos.

Clinical research starts just with a team of doctors with a common goal. They focus on exactly one thing, studying a specific disease. They then present their idea to an independent review board, and the board needs to approve the study before it can be opened up for participation.

The gentleman works for Spectrum Health, but he was representing the COG. He was asking for permission to enroll Mallory into a specific COG Neuroblastoma clinical research program. Essentially the doctors are going to remove the tumor, and then chop off a portion and allow the COG to study it for research purposes. A small sample of her blood, and bone marrow will also be going with the tumor sample.

We know that research doesn't happen overnight, and we know that sending out samples won't influence the kind of care that Mallory is going to receive, but we hope it will help the next person. We hope it will help mold and shape the kind of treatments that kids like Mallory receive in the future.

It wasn't long after he left, a very nice lady entered the room and introduced herself as a research doctor working for the Van Andel Institute. Her entire career has been spent studying neuroblastoma. She is literally one of the leading experts in the world on the specific disease that Mallory has, and she came up to our room to see our daughter. She is running her own clinical research at VAI on neuroblastoma.

We approved both studies. We felt it would be selfish and irresponsible not to.

The next step.

They have finished the bone marrow biopsy, also the broviac is now in place and now we're onto the tough part the abdominal surgery. I am ready to hold and cuddle and kiss my beautiful baby girl. This day has been the worst of our lives. Waiting around is horrible, the unknown is horrible, feeling this helpless is horrible. She is in great hands and yet there is nothing that can help with the anxiety we are feeling. Our hearts are heavy, we are numb, we are praying like crazy for our baby girl!

Surgery Update 4:15 pm

"Malibu" has moved from the nuclear medicine to the operating room. They said the bone scan went on just like it is supposed to, and they are starting the hard part right now.

That's all we have for now!

Surgery Day (Ashley)

Mallory had her last bottle at 4:00am this morning, this little girl is a trooper, she spent majority of the morning and early afternoon curled up in my arms sleeping. She only made a peep when they had to do labs on her. She was even smiling and cooing at us in between falling in and out of sleep.

We met her surgeon this morning and I have to say this is an amazingly talented man. Dr. Robertson is going to be taking care of my baby and the lord has blessed him with the skills that our daughter requires in her extensive surgery. He decided to not operate on the right tumor and talked about how chemo treatment is going to be our best option to try and shrink the tumor and hopefully have it shrink away from the vena cava. If that doesn't work we will be exploring different options, he has dealt with children and adults with far worse tumors that intertwine in major arteries and blood vessels he just doesn't want to risk anything right now if the chemo treatment is successful.

They had a few different people come and talk to us about clinical trials. These involve any extra bits of tumor, blood and bone marrow that they take from her that will be put to use for further reaserch for Mallory and other patients with Neuroblastoma cancer. We opted to do this, everything they take from her will obviously be used to diagnose and treat Mallory first this is just the stuff that they have extra of. These are non invasive treatments, they will only take from things that she is already having done. We are thankful that they are continuing to do research and are finding other treatment options for children like ours. We are hoping that doing this will help the process with other families and other children going through the same thing.

We were very blessed to meet another woman going through a similar experience. Miss Lola, her daughter, is 5 years old and is fighting leukemia. Lindsey has reached out her hand through this horrible process and I have only chatted online with her a few times but she has given us hope, she gave us the biggest hug, and cried with us and we are so thankful to meet her. Even though our daughter is fighting for her life like her daughter is there are still no words we can say to them to make this process any better and vise versa. Its just wonderful to have someone to lean on, ask questions and can go to for comfort and support and knows what we are going through. God bless Miss Little Lola and we pray for her as well and for her family.

Surgery begins.

We just let the doctors take Mallory back. It was a powerful moment in the room; Mallory was being bombarded with prayers from thousands of people around the globe.

Even the Anesthesiologist got teary eyed- there was that much electricity in the room. "I'll be the doctor when we go back, but I'm a mom too!" It was amazing.

We appreciate all the love and support of everyone out there. It's between God and the doctors to keep her safe now.

We will update when we know anything more.

Thanks everyone!

-Ryan & Ash

This blog

This blog is now available at, as well as the original address.

We figured it was easier to remember, so we registered the domain.

Day 3, surgery day

Do you get grumpy when you haven't had a meal in a while? I know I do. Little Mallory has to go 8 hours without food or water! She isn't very happy this morning :(

Our little peanut, the fighter!

Today is going to be a tough day. Mallory started fighting for her life even before she was born and today she is up against a lot. She had to stop eating around 5:00 this morning and will not be able to eat anything until her surgery at 1. Ryan and I were thankfully able to get some sleep, It didn't come easy but after these past few days we are burnt out, our mind and bodies have taken a huge hit and thankfully we both got around 5 hours of sleep.

There is no way we imagined this is the road that we would be on. We love our baby girl with all of our heart. I can remember the day she was born and my heart just growing that much bigger. Those round cheeks, that sweet cry, and her little tuft of hair. We've had her home with us for almost 9 weeks and I wish I could take her place, that I could take her pain, that I could go through this and not her. We don't remember life without her, she is a part of our family, and she is stuck with us.

Dear Mallory,
We are not sure why or how you got this sick. We wish that they could trade places with you, no child should ever have to go through this. You are what is keeping this family together, you are the glue that is helping us stick. We love you with all of our hearts baby girl, we are so very blessed to have such a beautiful STRONG daughter in our lives. Your sister Jillian just adores you too, you are the only one that gets kisses from her, she has just gobbled you right up since we brought you home. This road is going to be a tough one little girl but you are a fighter. We need more time with you, we need to see those beautiful smiles, hear those most amazing giggles and see you grow into a little person. We will be with you through every step of this process. Little Girl you are up against a lot today but just remember you are a fighter! There are people around the world praying for you today Mallory, just know that each and everyone of them even if they haven't met you love you too and they are rooting for you baby!
Love Always and Forever


Cancer Sucks! (Ashley)

I just want to clarify for everyone that this experience is NOTHING like Grey's Anatomy. Although they are working there hardest to get things moving for our baby girl, it definitely is a MUCH slower process than what they show on TV.

We have been introduced to many amazing doctors, specialists, nurses and staff. We are very blessed to be working with these talented and brilliant people. They have made this journey as smooth as possible for us (not that it has been any where near smooth) and Miss Malibu!

We are learning things that a family should NEVER have to go through. We were introduced to Chester today, this is a chest where they demonstrate and show us what a broviac central line is. Because this is a direct connection to her blood supply when we take her home they will teach us how to take care of it. During the surgery they will be putting in the broviac, this is so that they can draw labs, administer chemo and any other medications she may need without having to poke her every time. We obviously have a LOT to learn about this still.

Today Mallory has been a champ she pretty much slept through both the echocardiogram and the ultrasound, she had her little eyes half open and a silly little grin on her face the whole time. I am thankful that this little girl can still smile, giggle and be just such a joy to our lives and she has no idea of how sick she really is. We are thankful that she will hopefully never remember any of this agonizing process. This girl smiles even when our eyes are swelled up with tears, when are hearts are breaking for her she is giggling and cooing at us.

Our Little (but very BIG) Jillypie came up to see us today. We needed her hugs, kisses and stubborn "no's" today. That little girl is also a CHAMP! She is in her own world and for that we are thankful. Her life revolves around quoting the abc's (not in any specific order, right now "e" is her favorite!), taking naps and nothing to do with cancer. We are thankful that even for a few moments she takes our mind off of it and reminds us that we have to distract ourselves and still enjoy things even with all the bad things surrounding us currently. I don't believe that Jillian has ANY idea of what is going on, we could try to explain this to her but she still deserves to be a kid. We would like to keep her life as normal as possible for the circumstance. I am forever grateful for my mother and erika grala for taking her for us right now so we can focus all of our energy on Mallory right now.

I would like to state that "cancer sucks". It sucks worse than anyone could ever imagine. People have reached out to us from continents away, there are people that have contacted us that have children going through treatment and they have sent us nothing but encouragement and positive thoughts. These people amaze me, they have not let this run there lives, their children may be sick but they are just like any other family this is just a road bump. These people have shown me that it is possible to return to a "normal" life, it may not be the normal that we were used to but its a normal that we will get used to eventually. And as much as this journey is going to suck, we are not going to allow it to tear us apart, we will pull through this.

Day 2 (Ryan)

Here we are at Day 2. I woke up this morning, rubbed my eyes, looked around, and we're still in the nightmare. I wasn't able to sleep it away. Normally when I wake up, nightmares end, and I go about my day care-free. This one is here to stay. Dammit.

We had an echocardiogram (ultrasound of the heart area) today, and then later yet another ultrasound.

Lots of doctor meetings today. Helen Devos Childrens Hospital is currently forming a massive surgical team to give Sweet Baby Mallory a radical surgery. It is amazing watching multiple surgical teams combine efforts to provide Mallory with the best care available.

The echocardiogram this morning gave us good news; there does not appear to be a third tumor on the inferior vena cava. The bad news is that the stuff they saw was actually the right-adrenal-gland tumor pressing into the IVC. This is bad because the right-side tumor is more intricate than we had thought yesterday. The echo showed that the tumor was only pressing into the IVC, rather than growing into it.

The pediatric surgeon decided to order a third ultrasound to study the interaction between the tumor and the IVC once more, so off Mallory went for another test.

She is being such a trooper through all of this. The Facebook response has been overwhelming. We really, really appreciate all of the kind words and support from everyone around the world. There are reports of literally thousands of people praying for our sweet sweet baby, and I thank you all for each one. Those prayers are giving Mallory the strength she needs to ride this ride.

The third ultrasound gave us a bit of a stunner- the right adrenal tumor is actually growing into the IVC. This means they are becoming one, and separation becomes much more difficult.

Tomorrow is where rubber meets the road, tomorrow is surgery day. They are planning on putting Mallory under around 1:00pm tomorrow. She will first go in and get her bone-scan done to look for cancer spots in her bones. She will then get wheeled into the operating room, where she will have bone marrow drawn from her hip bone. They will then install a central-line (broviac) for use with future medicine delivery (i.e. chemo). Once that is all done, they will start open surgery on her abdomen. The plan is to remove the entire left-side adrenal gland, tumor included. At this point they are not planning on removing the right side tumor, due to the complications with the IVC.

We met with a Endocrinologist today, too. With the removal of at least one of the adrenal glands, she will likely be on permanent hormone replacement drugs for the rest of her life.

I'm continually reading articles on the Internet regarding Neuroblastoma, and some articles on being the father of a child with cancer. There are lots of good resources out there, and I hope to make use of as many as possible.

I can read-up plenty, but sometimes the little things catch you off guard. The nurse just came in and talked with me about tomorrow's surgery, and what I need to know. She then pulled out a consent form for blood transfusions. The hospital is currently getting a stock in of blood that matches her blood type. They are specifically ordering blood that matches my daughter. A lot of blood, and they are ordering it the day before a massive surgery.

Dear God, please be with the surgeons tomorrow. Guide their hands and their minds to do the best work possible. Please let them have a productive surgery, and let Mallory come out of this stronger than ever.  Oh, and please God, if it be thy will, please let the doctors leave all that extra blood on the shelf. They won't be needing it. Amen.