Monday, June 27, 2011

June 27, 2011 - Day #23

The doctor called at 1am today. Riker is throwing up her entire feeds at the hospital. She never throws up when I feed her. What are we doing wrong? They decided not to feed her anything until I could get in later this morning. This is so frusterating.
Today, I brought Valentine to the hospital to see Riker. Big risk - I did it all by myself. I had a friend standing by to come get her as soon as she got to be too much. It is so difficult negotiating a baby covered in tubes and wires while a rambunctious 2 year old and running about touching all the machines. I was so scared that Valentine would rip out one of her lines.
The trip wasn't so bad. It wasn't particularly easy but it went well. Valentine got to play and she got to spend some time with her sister. For a moment, it felt normal - it felt good. I missed having my girls together. Valentine is such a good big sister.
I was also able to talk to the doctors again. They set my mind at ease... the fact that we're worring about Riker's food intake is a good thing. It means that all the things that could be going wrong aren't. Apparently, they are not lucky enough to be worrying about food with most infants at this point in their treatment. That is good. Also, they are willing to let me take lead on what to try in regards to nutrition. That is very good.
The doctor agreed to let us try cup feeding since she won't take a bottle. After a try today, I think we might get a marginal amount of success with a little time and effort. With any luck, she'll be able to learn to drink from a cup and this method will work as an alternative to bottle feeding. Additionally, when I'm not at the hospital, they are going to treat her feedings more like when I feed her. Instead of just having her lay in her bed with the food being put directly to her stomache with the NG tube, they will sit with her upright. Then, when she is finished the feed, they will burp her. We will be giving her 1/2 an ounce every 2 hours during the day. At night, we will do this every 4 hours. Hopefully this will work and we can build up from there.
I feel so much better and I finally feel like I have a little control. I feel so much better being able to see my daughters in the same room. Today, I feel much better. I can do this.

June 26, 2011 - Day #22

Today I am spent. I feel like I have reached capacity and can no longer keep up this pace. I miss Valentine when I'm at the hospital and I miss Riker when I am home. I miss my own bed and I miss my husband. I miss my life and I'm feeling sorry for myself today.
I need to get Riker eating the proper amount of calories. I feel like this is what will end up killing her. If I cannot get her to eat, she will waste away. She will not be strong enough for the intensive chemo that she has ahead of her. I think that if I was there all the time, Riker might be able to eat what she needs to and not throw it up. I just don't know how I can manage being at the hospital 24/7. What if I can't and it does end up killing her?
After speaking with the doctors, I think we have a plan. Riker fed very well from me today and we're going to try a similiar, slower approach tonight after I leave. I thought we were going to do small feeds just like she's been getting from me, but the resident said they wanted to do continuous feeds still. I agreed to try it and I'm hoping for the best.
There is a sign in her room now that they are to call me if there are any changes in her nutrition plan. I hope she can do this.

Saturday, June 25, 2011

Mom and Roo 6/25/11

June 25, 2011 - Day #21

Another day, another nurse, another story. Apparently, Riker started throwing up her feeds again last night so they changed her nutrition plan again - no one told me until I got to the hospital tonight. Ugh! She was back to continuous breast milk - 10ccs an hour which adds up to 1 oz every 3 hours. This is still not nearly enough. When I asked that she be taken off while I was there the nurse complied and shortly after I fed her, I went out to get some food with my husband.

When I returned to feed her, she had been placed back on the continuous feeds now increased to 15ccs an hour - 1oz every 2 hours. Again, I asked for her to be taken off these feeds so that she'd breastfeed. This time I was told that the orders did not allow for them to take her off... I'm supposed to feed her while she's having her belly filled with milk. Why is it that they are always making decisions regarding her feeds without telling me?

They are telling me that weight is a concern even though she's still up in weight since I brought her in. She feeds so well when I'm here and doesn't throw up. I'm so frusterated - I feel like I should be here all the time. We need her to get the ounces she needs directly from my milk so we can get her off the TPN. The longer she's on the TPN the more chances she has of damaging her liver.

Although the nurse tonight is not one I've met before, and the changes are very frustrating, she envokes confidence in me. She assures me that we'll come up with a plan and that I will be consulted about changes in the future. She seems to really know oncology patients and the weight/eating issues that are unique to AML patients. It's really hard for me to remember that Riker isn't healthy. Right now she really seems like she is.

We are now doing weights before and after I breastfeed to see how much she's taking in. (I already asked if they could/would do this and I was told no) Once we confirm that she's getting enough from me, I should be able to exclusively breastfeed when I'm here.

I really hope that we can get this part cleared up soon - the doctors need to me including me when they make decisions about her nutrition. It's one of the only areas that I feel like I have some control over and my knowlege and input is as important as their education.

Friday, June 24, 2011

June 24, 2011 - Day #20

This morning I got a phone call from one of the residents at the hospital. Riker's heartrate and breathing were elevated and they were concerned about what it could mean. It could be a sign of infection which is exactly what we're scared of at this point. It could also mean she's having heart troubles. An EKG and blood tests were ordered to find out what was wrong. They were hoping that it wasn't anything major but worried, nonetheless.
When they called, I was trying to get into the car with Valentine so that I could bring her to school. During the 2 1/2 minute conversaton with the doctor, I had to call her back inside 3 times. Poor Valentine, even when I'm giving her attention, I am still focused on Riker. Of course, I was horrified that I wasn't at the hospital for Riker. I hate choosing which child needs me most.
The doctor indicated that she was stable so I requested to be contacted immediately if anything changed. I told the resident that I was still planning to be there for the afternoon but would drop everything if anything changed to make them more concerned.
After an hour and a half, I was getting really nervous so I called her nurse for an update. Thankfully, her tests had come back without any alarming results but it did show her platelet and red blood cell counts to be low. At this point, the concensis was that the low red blood cell counts were causing the issue. Less red blood cells mean less oxygen so the heart has to pump faster to compensate.
So the next decision that had to be made was which transfusion to do first - platelets or red blood cells? In the end, platelets were given first to prevent a "spontaneous bleed." Every decision made in the hospital is a delicate balancing act of risk and benefits.
Thankfully, this seemed to work and Riker overall had a very good day, despite the fact that she refuses to sleep :)

Wednesday, June 22, 2011

June 22, 2011 - Day #18

Today we got a mat for the floor!! I know that I don't really need to "worry" about Riker's milestones but I just want to do all the normal things everyone else gets to do with their babies. No matter how short or long her life is, I want this time here in the hospital to be as good as it can be. I want Riker and Valentine to play... I want Riker to develop and enjoy everything she can. I don't know how much time she has and I don't want any of it to be spent lying in bed while she's awake. Other parents don't leave their babies in their crib all day long and I don't want to leave Riker there either.

Riker's not a great sleeper while I'm away. It seems that as soon as I get to the hospital, she feels safe enough to sleep. I know part of it is she never wants to miss anything. I've always been the only one she'd relax with. I so badly want to be with her all the time - I also want to be with Valentine all the time. I know they'll both be ok. I know they will adjust and not remember most of this. *I* don't feel ok, though. I miss them - it breaks my heart to leave either of them. When I'm with Riker, I nap when she naps. When I'm with Valentine, I go to bed early. This doesn't help the exhaustion caused by the stress... the driving back and forth... the trying to get it all done.

The doctors continue to be concerned about Riker not taking a bottle. Dispite my insistance that this is normal for her, I think they are more concerned than they need to be. They've put in orders for her to work with a nutritionist and a speech therapist. I am 100% supportive but still not yet concerned. I have confidence that she'll get there. This is more about personality than ability. They worry it's a development issue.

The nurses are still only giving Riker 1 ounce of breastmilk every 4 hours. I'm not sure why they haven't tried to gradually increase this - especially with all their concerns about calories and wanting to get her off the NG tube. I'll be discussing these issues with the team tomorrow. They're a great team of people here but sometimes I just don't think they're on the same page! I'll set them straight ;)

Her weight is currently at 11lbs 11oz and when she came to the hospital she was only 11lb 20z. I truely believe that the weight she is losing right now is still fluid. It would make a lot of sense that a baby who's been through everything she's been through over the last two weeks would lose weight not gain 9oz. We'll see tomorrow, though.

Tuesday, June 21, 2011

June 21, 2011 - Day #17

Riker seems stronger and healthier every day :) We had a wonderful visit and she's smiling and laughing now. The staff at the hospital all tell me what a happy and beautiful baby she is. They don't believe me when I tell them all she did was cry when she was home. It is so nice to see her so content. It makes me wonder/worry that the cancer was eating at her ever since she was born. I hate to think my baby was in pain that long.
I am getting more comfortable in the hospital and am finding ways to better advocate for my daughter. The breastfeeding is going well and I've requested that the nurses try to bottle feed at least once per day. I'd like to eventually get her off the NG tube and cannot be there 24/7 to breastfeed. The nurse seemed uncertian but I was able to get comfirmation from the doctor that they should be trying. It feels good to be on the same page as the doctors :)
Now that we've settled in, I'm becoming more concerned about Riker's development and her ability to hit her milestones. It's scarey to think that she may spend her 1st birthday in the hospital and she hasn't even learned to roll over yet. Obviously, she will be a bit behind with all of the chemo and sickness she'll experience but my poor baby hasn't even learned to roll over yet!
Her room is 12x12 at best and the floor is cold and hard. In her bed, they have her sleeping in her boppy pillow all propped up so that she cannot move. The only piece of baby furniture she has is a papasan swing. How is she going to develop there?
At my request, the doctors met today to work on a plan that includes a physical therapist, an occupational therapist and a speech therapist. I look forward to discussing their plan tomorrow. I am excited to see Riker be as normal as possible in the impossibly abnormal enviroment she will call home for so long.
Unfortunately, all of this is really taking its toll on me. Each day I become more and more exhausted. My body aches and I am scared to death I'm going to get sick. Juggling my family at home and my baby almost an hour away in the hospital is more difficult than I could have imagined. I am rarely getting more than 4 hours of sleep most nights and I find my eyes heavy during the long drive back and forth. Something has to give soon - I need to find some time for rest. As time goes on, I hope I can find a more reasonable balance. I don't know how I'll go back to work when the time comes.

Monday, June 20, 2011

June 20, 2011 - Day #16

The doctors ended up respecting my wishes in regards to formula in my breastmilk. I think that they actually agreed that the formula might be too harsh for her tummy. At this point they are giving her 1 ounce of my milk every 4 hours through a nasal gastric (NG) tube. This is far less than she needs so she's also getting total parenteral nutrition (TPN) through an IV. Once we get her calories where they need to be she'll be on breastmilk only.
Today, it was time for them to change out her NG tube. Since I was there to breastfeed, I requested that they leave the tube out while I was there. Suprisingly enough, the doctor agreed! It felt great to have her feed with no tubes or wires coming out of her face :) Unfortunately, since she refuses to take a bottle from the nurses, the tube had to go back in after I left the hospital. I wish I could be there to feed her all the time!
The genetic testing came back today, too. Turns out she had no chromosomal abnormalites - good or bad. Among other things, we were looking to see if she had the FLT 3 gene (very bad) or cells with Trisomy 21 (very good). Since she didn't have any, the course of treatment that we started continues to be her best chance.
Her doctors say she looks great and is a pleasant, beautiful baby. At this point, she continues to do as well as they could hope for this stage of her treatment. They look far more hopeful than they did when they gave us the prognosis less than 2 weeks ago.

Riker's song

This video was taken only days before Riker was diagnosed.

June 19, 2011 - Day #15

Our oldest daughter, Valentine has hives and has been throwing up from the stress this has put on her. She continues to miss her sister and ask to visit her. She's too young to understand and yet understands more than someone her age with her maturity should. It is breaking my heart.
Usually Valentine is incredibly independent and capable. Now she's become clingy and always wants her mommy. I have other people helping out with her constantly so that I can be with Riker and it is really taking its toll on her. Last night she spent the night with my mother and I was told she woke up 20-30 times calling out for me.
I continue to feel like I am not able to give either of my daughters what they need :( Valentine is strong and she will be ok - I know that. Riker is young and the staff at the hosptial is amazing - she, too, will be ok. It's me that is not ok. I feel that I am being robbed of time with both my girls. :(
On a lighter note, our amazing friends threw us a benefit today. The support was amazing and overwhelming. I have been to benefits in the past and now realize that you simply have no idea what it is like to be the recipient until you've been in those shoes. It is such a combination of emotions and I felt like I was on a rollercoaster all day long.
It was nice to get out of the hospital and spend some quality time with friends. It was great to get out and see all the support of people that a rooting for our little girl. Thank you to everyone that is supporting us. It is only with your help that we are getting through this at all.

Saturday, June 18, 2011

June 18, 2011 - Day #14

Only one month ago, my Uncle David passed away after a very short battle with AML - the same leukemia that my daughter has. Infant leukemia is very different from leukemia in adults but it still seems horrible and unfair to have the same disease hit twice in such a short time to the same family.

Today, his wife and two daughters drove up from New York to support my family and visit Riker. It was a good visit - Riker was pleasant and generous with her smiles. However, I know it was tough on her visitors today. With their own grief of losing a father and husband so recently - how horrible it must have been to see such a young baby experiencing the same thing they just watched kill the person closest to them.
I am grateful that they took the time and braved the journey. I know it wasn't easy.
I love you all - Aunt Leslie, Cousin Erika & Cousin Jackie.

Friday, June 17, 2011

June 17, 2011 - Day #13

Today was a good day. My best friend, Mina and I visited with Riker together and she was very much like she normally was. She's a whole pound lighter and feels like my baby when I hold her except for all the tubes and wires that hang off her body. She fussed and cried a lot but it was her normal complaining that I've grown so accustomed to over the last 4 months.
Because of the puking yesterday, I found out that they had not fed her anything through her NG tube since the last time she threw up. They had switched to giving here nutrition through IV which sounded like a set back to me. They did, however, let me breastfeed. Riker was so excited to feed and made the familiar content moaning as she ate just like both my girls did when they fed. Just like yesterday, she kept the breastmilk down when I fed her directly.
As I was getting ready to leave, the nurse indicated that she would be letting the doctors know that they shouldn't fortify her breastmilk because it doesn't agree with her. I asked her what she meant by "fortify." This is when I found out THEY HAVE BEEN MIXING HER BREASTMILK WITH FORMULA!!! I am livid. The doctors have been sharing all the details of her treatment but no one bothered to share or ask me about this. Apparently, they were doing this so that she'd get the calories she needs.
Breastmilk has comparable calories to formula and this was unnessary stress on my little girl. Perhaps my baby wouldn't have been puking and struggling so much yesterday if they hadn't done this. Surely she's not getting the calories she needs if she's puking up her meals! Clearly the breastmilk agrees with her much better.
I have been pumping like crazy every 2 hours at home, taking supplements and drinking teas to keep my supply up for her. The hospital currently has 80 ounces of my milk on hand. The is simply no excuse for this and I feel as though they kept it from me.
I feel betrayed!
The picture above is what my daughter looks with a full belly of gentle mother's milk that she can digest and keep down. They damn well better not make such a decision without consulting me again! The doctors are going to get a piece of my mind tomorrow.

my Roo - Day #12

Despite my worry and heartache I cannot deny - she looks way better each day :)

Thursday, June 16, 2011

June 16, 2011 - Day #12

Today Riker turned 4 months old. Today has been one of the most taxing for me.
Valentine has been missing her sister a lot and has been acting out. I want them to see as much of each other as possible but it is so hard. Like any normal 2 year old, she's a germ factory and always seems to have a runny nose and cough. Of course, she can never remember to cover that cough, either.
Since the doctors have assured us we should bring Valentine anyway, I brought her and my mother to the hospital today. At first it looked like it would be a great visit. I had Riker in my arms and we were headed out to watch Valentine play with the toys in the atrium. I had it in my head that it'd almost be like home.
Before we could even sit down, Riker started heaving and puking all over herself and me. Shockingly, the color was mustard yellow. The heaving was the scariest part. I went back to Riker's room with her and Valentine stayed with mom to play with the toys.
There was a lot of talk about calling in the doctor and finding out what was going on. At that time, I also found out that she had puked green earlier and that this was the third time she had puked within the past few hours. As usual with hospital time, it took a very long time for a doctor to come and speak with me. When one finally did they didn't really have an explaination for me. They decided they would run a test to see if there was a bowel obstruction but they did not think it was likely. It was probably just a nasty side effect of chemo.
Most of the visit, Riker was uncomfortable and crying. When she'd finally fall asleep, Valentine would act out and wake her up. Not able to express her feelings, Valentine was hyper and impossible to deal with. She would not touch her sister or sing to her or even look at her. When we went for a walk as a break, she welled up with tears and started crying. "I miss my sister - I need her. Let's go back upstairs, Mommy." The whole time my heart was breaking for both my girls.
Our visit lasted about 7 hours today and we all left emotionally and physically exhausted. As I left Riker's room, I broke down into tears. Riker was still crying in her crib and Valentine was fighting against the straps in her stroller. It breaks my heart that I cannot be in two places at once. I feel as if I am not giving either of my babies what they need and deserve. A mother shouldn't have to choose between her children - she should not have to leave either child.
From a medical perspective, I think that Riker is doing just fine for this stage of her treatment. I believe these side effects are expected and not reason for concern. However, I can't stop myself from panicking. Riker is not the same baby she was 12 days ago. She doesn't look the same or act the same and definately doesn't feel the same. She's 2 1/2 lbs bigger and I feel akward holding such a large baby covered and tubes and wires. She doesn't hold her head up well and seems uncomfortable no matter what position i put her in. The methods I used to comfort her and the ways that I used to hold her are no longer acceptable because they will cause her pain or make her throw up.
This sucks - how can this be our lives now? How can I continue to stay strong? How can this last 6-9 months? Today I do not feel strong.

Wednesday, June 15, 2011

June 15, 2011 - Day #11

More victories today. Riker is off oxygen and has been released from the PICU. We now have a bigger room with a bed for me to sleep in and a shower for me to wash in. The view is nice, the room is bright, and there is plenty of room for me to bring some of Riker's things and make it feel like home.
I also got to take Riker for a walk outside. The nurse laid her in a Radio Flyer wagon and I wheeled her through the hospital and out the door. It was wonderful - and it was awful. It was the first piece of real life that her and I have had together since her diagnosis and I couldn't help but wonder if it was our last. Each day is a gift now but it's difficult to appreciate it when all you can do is think about losing your baby.
After about 36 hours and a move upstairs, I needed to head home for Valentine. The guilt of leaving my baby alone in that hospital is tearing me apart. The guilt of leaving my other baby at home is tearing me apart just as badly. I don't want to miss a single thing in either of their lives. I always want to be here when they wake up crying and need me to kiss away their tears.
Today was another victory but it is bittersweet. I just want both my babies home with me... I just want my life and family back :(

Tuesday, June 14, 2011

June 14, 2011 - Day #10

Another good day. Riker was finally extubated and was awake when I arrived at the hospital. She is still on oxygen and has a feeding tube in her nose. I had to wait 4 hours from extubation to try to feed her and her nurse was certian she wouldn't be able to nurse at first. My little girl latched right away! Boy, was I proud at their suprise :)

As a side effect of the breathing tube, poor Riker has no voice and a horrible cough. I think the poor thing is trying to cry but all she can do is let out a few raspy breaths. It is so hard to listen to her and it sounds like she's struggling to breath. The nurse assures me this is normal and that she's breathing just fine. I'm on edge listening to her as I type this.

Generally, I'm in good spirits and so thankful for all the good news and encouragment from friends. Just over a week ago, I got the worst news any mother could get. Now I'm rejoicing that my little girl is breathing on her own. My world has completely turned upside down.

The last week or so has felt like a dream. I've been home a lot preparing for the rough road ahead of us, waiting for them to wake my Riker. Now, I feel liked I've crested some horrible rollar coaster ride and I'm just going to have to hang on and hope I survive. Tonight, I'm spending my first night in the hospital and I already miss Valentine and Jon. Balancing my family life will be nearly impossible over the next year.

Monday, June 13, 2011

waking up

June 13, 2011 - day #9

GREAT NEWS! Riker's nurse says she's having a great day. She's opened her eyes and she's looking around. The doctors are expecting to extubate her tomorrow! Big wins over the last few days. Now the waiting game begins. How long before Riker recover and how bad will her side effects be? I'm planning on staying the night with her and nursing her until her heart's content tomorrow! I will keep all posted :)

Sunday, June 12, 2011

my little fighter

June 12, 2011 - Day #8

Today the oncologist came into Riker's room with a smile on his face. Riker is doing as well as we could hope for at this point. She is on day 5 of her chemo treatment and past the real danger period. At this point, she's peeing on her own and the catheter has been removed. She's had two large bowel movements which is a VERY big deal for a little girl who couldn't digest food 2 days ago. She's getting more breastmilk and digesting it well. Her swelling is slowly going down. She hasn't had any fevers. For our little, sick girl, life is as good as it gets right now :)
The doctors say they should be able to extubate her tomorrow or Tuesday. She's trying to hard to wake up despite all the meds they're giving her to sleep. My girl's a fighter :) I cannot wait to be able to hold my baby girl again and feed her. Today is a precious gift and I am going to hold on to that.

Saturday, June 11, 2011

Our Hospital stay at Maine Med

Here is the rest of our story to date:
My sister-in-law, Kelly, drove me down to Maine Med where we beat the ambulance by seconds. Once she got there, Riker was admitted to the Pediatric Intensive Care Unity (PICU). Niether Kelly or I had gotten any sleep in nearly 24 hours and we were completely wiped. It was now Sunday, the longest day of my life. Kelly left late into the morning and I stayed by Riker's side through everything that day.
Throughout the entire day, experts attempted to find veins - they picked every vein they could find moving the needle all around for mintues trying to get an IV in her. She was going to need a lot of blood drawn for testing and a lot of blood transfusions to do so. She only had 1/3rd of the blood an infant her age should have. My strong baby with her powerful lungs screamed and screamed. Even while they picked at her, she'd occasionally wimper and fall asleep. She was so exhausted. Eventually, they had to have a nurse from the NICU come up and try - since she had more experience with babies, she was finally successful.
After taking care of our older daughter Valentine's needs, my husband, Jon, joined me at the hospital. In the eight years we have been together, I have never seen him cry. Not when his parents passed away, not when his father died last November of cancer. That day, I saw him completely breakdown into sobs over our youngest daughter's bed. Unfortunately, there have been many more times we've cried together since then and on this long, difficult jouney, I'm afraid there will be many more.
Late that afternoon, they decided they would sedate her for a couple of procedures. They needed to get a central line in her groin, they needed to check her spinal fluid for infection and cancer cells and they wanted to attempt to extract some bone marrow for testing. In order to do this, they had to intubate her which meant no more breastfeeding until they could extubate her again. Since she would be asleep, so Jon and I went back to tending to Valentine.
After the procedures, we learned that Riker did not have any infection or cancer in her spinal fluid. This was a big win as I do not believe they would have even treated her if they found cancer. They were unable to get the central line in her groin and had to go back in to put one in her chest. They were also unable to get any bone marrow but felt they could make due with her blood.
On Tuesday, we returned to the hospital to meet with the oncologist. Riker had Acute Megakaryoblastic Leukemia (AML M7). Over the next coming days, we would find out just how rare this particular form of leukemia is, especially in an infant so young. Typically, the disease is found in adults aging over 60. When found in children, the chances are improved of long term survival but they still have a poor prognosis. More often than not, children who are diagnosed with this specific form have Down Syndrom. For those children, chances of long term survival are marginally higher. The doctors suggest that Riker maybe a "mosiac" and that some of her cells have the extra chromosome found in people with downs. Blood has been sent out for testing - this is not likely but if she does have this anomaly, it will increase her chance of survival.
The oncologist did not seem hopeful but indicated it was worth trying to treat.
The oncologist we met with posed us with a difficult question, one which needed an answer immediately. Treat Riker at Maine Med or enter a clinical trial in Memphis, TN at St Jude's. The doctor could not tell us if the trial was even helping current patients and was not sure what she would do if she were in our shoes. She wasn't even certian that the medicine would not do harm. Of course, since it was a trial, we might not even get the additional medicine since there is only a 50% chance in any trial. The decision had to be made immediately as they needed to start chemo the next day and it had to be started at the proper hospital. As difficult of a decision as it was, Jon and I decided that the support of our family and friends, coupled with our need to give Valentine as much of a normal life as possible was more important - it was too big a gamble to risk it. Riker would continue to be treated at Maine Med.
On Wednesday, Riker was scheduled to start her chemo. The protocal the have her on is agressive - it's only one step away from what is needed for a stem cell transplant. Since she was still intubated and sleeping, we stayed with Valentine and did not go to the hospital. In the morning, the oncologist made one more attempt to obtain a bone marrow sample and was successful. In the afternoon, she began her first chemo treatment.
We also found out that day that our oncologist actually did his residency at St Judes. In his stay there, he treated 4 patients with similar diagnoses to Riker. He also indicated that there had been long term survivors. It felt good to have him in our corner.
Riker tolerated her chemo well but the first 48-36 hours after starting this protocal are critical. The doctors are always concerned that the chemo may not work. If the chemo does work, there can be complications as her system tries to process all of the dying cells. Since Riker's system was responding well to the chemo, she was creating an excess of uric acid. This can cause renal failure as the kidneys have to process all the waste or even worse, Tumor Lysis Syndrom (TLS). The doctors assured me that this balancing act was normal and good news - the chemo was working.
Over the last few days, Riker has shown that she's a fighter. She's passed the most critical hours of this chemo treatment with no fevers and no sign of infections and her system is processing the the dying cancer cells. Today, the oncologist called me and sounded nearly happy. Riker's swelling is finally going down and she is starting to pee. This is our first major victory in this journey and we are hoping she'll be off the ventilator as early as Monday. I know we still have a very long, difficult road ahead of us but, for the first day in nearly a week, I feel hopeful :)

Friday, June 10, 2011

How it Happened

Many people want to know how we found out that our Riker had this awful disease. Here is the story:
Riker had always been a fussy baby and was diagnosed with "colic" very early. We have no idea if this has anything to do with her cancer; however, I was very used to her crying nearly all day by the time she was really sick. She had some bruising on her ankles from diaper changes but a friend had assured me this was normal - her son had them as well.
Earlier in the week, Valentine had an awful cough that she shared with her sister. Riker was coughing occasionally but didn't seem overly uncomfortable or more fussy than normal.
On Thursday, June 2, 2011, I went to my breastfeeding support group. Riker seemed fine and I was praised for her big fat belly. Later, I found out that her liver and spleen were enlarged with cancer cells causing the big belly. I asked about the bruising and was told it wasn't really normal and I should have it checked out. She had a 4 month well baby appointment coming up and I figured it could wait.
On Friday, June 3, 2011, Riker had the best day I ever remember her having. I worked from home that day and she slept a lot which I assumed was due to a growth spurt. When she was awake, she was full of smiles and quietly talked to her toys while I worked. I went out to lunch with my best friend, Mina, and she was the center of attention.
On Saturday, June 4, 2011, Riker had an awful day. Her cough had gotten worse and she was fussy and crying when she wasn't sleeping. I assumed her cold had just taken a turn but that she was fine. I considered going to the doctor's office or ER to check for an ear infection but didn't want to be a paranoid mother. We left for our vaction in Bethel this day hoping that a good night's rest would help her.
When we arrived at the condo in Bethel, she was inconsolable. I was worried and considered calling her pediatrician's on call service but again, didn't want to be overly paranoid. After she ate she puked most of it up which was normal for her because she had GERD and often spit up. After she spit up she started heaving and crying between heaves. I have never seen such a small infant do that - only older children and adults. It was at that point that I decided to call the doctor.
By the time they called back, I was again questioning whether I should bring her to the ER. I was upset because we had just started our vacation and were supposed to go to Santa's Village the next day. Of course, the nurse who called back said she needed to be seen so we drove the 40 minutes to Stephen's Memorial Hospital in Norway.
When they saw her they immediately asked if she was always so pale. Riker is extremely fair skinned so I said, yes... The also asked me if her belly was always so distended. I also said, yes... We were brought into a room pretty quickly. As typical for us, Jon and I joked and he took a picture of a sign on the wall. We didn't think we had anything to worry about - some antibiotics for an ear infection and we'd be on our way.
The doctor arrived pretty quickly and we undressed her for a weight check and examination. At this point, we say that her legs were covered in awful bruises. Everywhere I had touched her, horrible finger prints could be seen and her knees looked like she had been running into walls. In my horror, I assumed that they'd be calling in a social worker and accusing me of abuse. I have never laid a hand on that precious baby - I could not understand why she looked like that. The doctor indicated that he wanted to do a blood test that he'd send off to my pediatrician. He indicated that there might be a blood sugar problem or something similar. He did not indicate how worried he really was.
When the doctor returned, Riker and I were sleeping on the exam table and Jon had fallen asleep in the chair. The doctor said that the news was not good and I immediately sat up. He explained he was pretty sure that the diagnosis was leukemia and that she should be taken to Maine Medial as soon as possible. He assured me that most leukemia was cured at a rate of nearly 90%. He said she was very sick but stable and we could wait for them to send up a pediatric ambulance. I was horrified by the entire experience, drained, exhausted but I had no idea how bad it would get.

Wednesday, June 8, 2011

Riker Star Dresser was born to Tory and Jon Dresser on February 16, 2011 in Lewiston, Maine. Riker had it rough early on when she was born three weeks premature and required to stay for observation for several days following her birth. Shortly after, she was diagnosed with colic and gastrointestinal complaints, but no one imagined that the real underlying cause of Riker's first difficult days may have been a diagnosis she received on June 5, 2011. Riker had a cough. Everyone assumed it was a common cold, but when her cough seemed to get worse, the Dressers brought little Riker to the Emergency Room. It was there that the doctors picked up on some peculiarities in the infant's condition. At the tender age of three months old, Riker was diagnosed with Acute Myeloid Leukemia, a condition rarely diagnosed in infants. Now, Riker is staying at a hospital in New England dedicated to helping this child succeed during the long and difficult road ahead. Her parents are doing everything they can to be with this little girl and to nurse her back to health, but their resources are limited and time off work means their needs are mounting. Meanwhile, Riker's older sibling, 2-year-old Valentine Echo Dresser, keeps asking where her baby sister is.