Wednesday, December 28, 2011

December 28, 2011 - Day 88

6 months, 3 weeks, 2 days since diagnosis

The Pedialyte does not seem to have helped. If anything, Riker is worse. And the screaming is taking its toll on all of us. In tears last night, my mother told me she could not handle Riker. All the crying is too much for her. She expressed to me how stressful helping out with the girls has been for her and that she's at her breaking point. I am very grateful for all she has done but I am doing everything in my power to parent and handle my girls just as I would if I was in my own home without help. I just don't know what else I can do to make this easier on my parents.

I know they do not like listening to Valentine be disciplined. A lot of her behavior has gone unchecked for a very long time. She lies and is spiteful. She has not had consequences that she can understand and learn from. She's getting better every day but it is tough work. I am so discouraged and feel like I'm being pulled in two different directions - I want to be a polite house guest but I cannot ignore that my daughter needs structure and discipline. I can tell that she feels safer with me and my boundaries... they never change.

I do not imagine we'll have our own home anytime soon. (On top of everything else, the roof blew off of our old house today - that'll help sell it :( ) I'm trying to talk through my concerns with my parents and keep us on the best terms possible. I am trying to make this work because it has to.

Things will get easier when Riker is feeling better and back to her normal self again. Tensions won't be as high and things will calm down. She really is the easiest baby ever when she's feeling her best. That's what is so concerning about this - she is not clingy and is always happy unless something is wrong. So.. something is wrong.

Tomorrow we go back to clinic and hopefully we'll have another plan of attack. In less than 2 weeks, we'll start to wean her off the Cyclosporine and that should help, too. Hopefully, she'll start feeling better and we can start focusing on more normal things like getting early intervention to work with her on hitting her milestones.

Tuesday, December 27, 2011

December 26 & 27, 2011 - Day 86 & 87

6 months, 3 weeks, 1 day since diagnosis

Riker's definitely not feeling any better. She's unable to stay asleep but is always exhausted. She's got very bad diarrhea and seems to be in pain. Whenever she's awake, she's either screaming or cuddled against my chest sort of staring. Yesterday was a national holiday so the clinics were not open. She wasn't bad enough to be taken to an ER. (I've vowed not to bring her to one unless I have to) So, I spoke with the on call doctor a couple of times yesterday and waited it out until today when I could bring her down to Scarborough for a clinic visit.

Despite the negative reason for the visit, it was really great to see Riker's doctor. We haven't seen Dr. Stanley since we left for Boston and he's been missed. His conservative nature and very thorough approach was welcome today. Despite Boston's nonchalant attitude towards the diarrhea, he was more concerned. He questioned GVHD and was concerned she may not be tolerating her formula. Regardless, he was interested in trouble shooting the problem and helping to bring Riker relief.

HURRAY!

So, for the next 48 hours, we're giving her nothing but Pedialyte. If she's having any trouble with her nutrition, it should be relatively easy to identify it this way. Of course, if she's not, we'll have, at least, ruled out one thing. We also had blood drawn for a chemistry analysis since the med changes made on Friday could also be the cause of some of her changes.

We were already scheduled for a regular clinic visit in Scarborough on Thursday so we'll be able to see Stanley again then. Hopefully, Riker will improve by then, either way. She's so uncomfortable and Mommy is completely drained! Hopefully, she'll sleep a little tonight so that I can.

December 24 & 25, 2011 - Day 84 & 85


6 months, 2 weeks, 6 days since diagnosis

Merry Christmas!

I cannot express how thankful I am to have had such a wonderful couple of days with my family! They were so normal! I did all the things with Valentine that I was hoping to. We made and decorated cookies. We painted sun catchers. We cooked and prepared for Christmas day together. We watched Olive, the Other Reindeer and ate kettle corn together. So many things that I've not had the time to do with her before.

Last year, we spent Christmas day in the ER with Valentine. I was 7 months pregnant and she'd been throwing up for over 36 hours. I had been telling her all month about the things we were going to do on Christmas Eve since I didn't have to work. We were both so excited. Christmas Eve was spent cleaning up buckets, blankets and beds. I had gotten Valentine this doll house I was so excited about. "Santa" set it all up under the tree, complete with dolls and furniture. I felt like I was a kid again I was so filled with anticipation. Valentine woke up in the morning, still sick, and didn't even want to open presents or look at the doll house.

And now, my past experiences, both with Riker and Valentine, have made me truly appreciate the holiday I've been given this year. On top of that, the generosity of our friends and loved ones... of even strangers... made this Christmas extra special. The girls did not go without even with everything being difficult this year. I am deeply thankful for all that made it so very special for them.

Much of the day, though, I had the fear that we'd end up back in the ER. I'm just waiting for the day that Riker spikes a fever - it's bound to happen. (we couldn't be lucky enough to avoid it, could we?) It always seems that kids get sick on weekends and holidays, too. Unfortunately, Riker wasn't feeling her best today. She slept nearly the entire day and worried me quite a bit. When she wasn't sleeping, she was cranky which is very unlike her. No fever, though. Just gotta keep an eye on her. If she's not feeling better tomorrow, I'll call the clinic.

December 20, 21, 22, & 23, 2011 - Day 80 - 83


6 months, 2 weeks, 4 days since diagnosis

Last night, we had our first journey to Boston as an outpatient. I was nervous that we wouldn't be coming home but I didn't need to worry. Our visit today was perfect.

We stayed at the Ronald McDonald House last night and it was a lot like coming home. Jon and I were "alone" for the first time in what seems like forever. Riker was in good spirits and slept relatively well. We had a very nice quiet night.

What a blessing it is to be able to stay there overnight, too. Getting Riker packed and out of the house is like moving, each and every time. There are so many things to remember and I inevitably forget something every time. Seriously, we had a car full for only one night. Fighting Boston traffic after packing all morning in order to get to the clinic before 9am would not be nearly as much fun as walking over after a peaceful night.

At clinic, Riker's levels were finally perfect. More than perfect even. They had no explanation for why Riker had been throwing up and they did not seem worried. Our primary doctor actually said, "Unless she hands me a note written in Arabic that says she has GVHD, she does not have GVHD - That's how unlikely it is." Currently, they're blaming it on the bicitra.

Although Riker's potassium level had dropped significantly, they decided not to make any changes to the bicitra dosing because it had been so difficult to get under control. If it still looks as good next week, they'll look at making changes. They did, however, drop her magnesium dosage in half and her sodium by two thirds. We are going to start weaning the Ativan, which I had delayed on as to not make changes during the vomiting episodes.

These are all great changes. There are only two more weeks until we start to wean her off of her immunosuppressent. Our next clinic visit in Boston is on January 6th and we should develop a plan then!

For now, we have a lot to celebrate this Christmas. It's only a day away :)

Wednesday, December 21, 2011

December 17, 18, & 19, 2011 - Day 77 - 79


6 months, 2 weeks since diagnosis

We had a rough weekend. After the bicitra was increased, Riker started to vomit and her diarrhea got really bad. We went through nearly a dozen clothing changes a day for the past few days. There were many calls into the on call doctors at the Jimmy Fund Clinic.

I don't think the bicitra is the cause. We only added an extra dose and now she's throwing up after all of her doses. I've known her stomach has been bothering her for weeks. I haven't been able to prove it but she's been uncomfortable and waking frequently during the night. I think that the bicitra is just the last straw on her poor tummy.

In the beginning, Riker was on Bactrim - a prophylactic antibiotic. She was throwing up so much that we had her on IV nutrition because she wasn't keeping down enough food. In the end, the antibiotic was the cause and it's been listed as an allergy ever since.

Riker is a risk for all kinds of infections - one of which is a very dangerous fungal infection in her lungs. One mold spore can take plant and colonize within hours smothering her and killing her. Bactrim is the very best medicine to treat and prevent this. So, since she's 5 months older, we've got her back on it. She's been on it for weeks but I think it's just been getting worse over time.

Thankfully, after moving around her Bactrim doses, she's holding down more of her feeds and the diarrhea seems to be getting better. The medical staff thinks it's important we try to keep her on the antibiotic and I agree. A visiting nurse came out to draw labs today and her electrolyte levels came back perfect. We must be doing something right. And even though Riker's puking, it doesn't seem to be bothering her very much.

The weekend was stressful for all of us. I was convinced we were headed back to Boston. At the very least, we' were going to the emergency room in Portland. The on call doctor this weekend was great, though. She put a lot of trust in me to assess Riker and we avoided intrusive measures. Riker wasn't running a fever and she did not appear to be dehydrated. Basically, I don't want to go into the ER unless we know she'll need to be admitted. The doctors there won't know what to do with Riker and she's at risk every time she steps into a hospital.

In the end, she is doing just fine. The visiting nurse will be back in 2 days to check her chemistry again and hopefully Riker will stay stable. We're scheduled for a clinic visit at the end of the week and hopefully we'll stay on the right path.

Tuesday, December 20, 2011

December 16, 2011 - Day 76

6 months, 1 week, 4 days since diagnosis

Riker is 10 months old today. Weighing in at 18lbs, she's as large as her sister was at a year old. She's big, beautiful, and healthy. Amazing.

Every day she is stronger and more normal. She enjoys watching her sister and eagerly waits for the breaks I take from work when I come downstairs to hold her and talk to her. I don't see the tubes that come from her chest and belly and she never noticed them to begin with. I'm finding it pleasant and surprising - I have a normal baby.

We are closer every day to cresting the 100 day hill. After 100 days, we'll start to wean her off all of the medication and then we watch. Hopefully she'll even become more normal... and we'll all get back to our lives.

My husband and I went to look at more houses. I think we're ready to walk away from the first. There's actually a lot out on the market at very affordable prices. We're feeling hopeful again that we'll have a home to call our own soon. Normal life is so close we can taste it. We're exhausted and ready for this to be over but we can't quit now.

Soon :)

December 12, 13, 14 & 15, 2011 - Day 72 - 75



6 months, 1 week, 3 days since diagnosis

We had our first clinic visit in Maine today. We only had to drive to the Maine Children's Cancer Program (MCCP) in Scarborough. It was really great not going all the way to Boston. It was nice to see familiar faces, too.

Unfortunately, however, Riker's potassium levels are back up. We've had to up her bicitra to 15ccs 4 times a day. That's a lot for such a little girl. Hopefully, they'll be better again when they pull levels on Monday. They plan on having a home health nurse come in and draw labs.

Living with my parents continues to be an adjustment. Jon hasn't stayed here much and things are tense between us. I'm trying to find a routine that will allow me to take care of the needs of the entire family and keep working my job. Valentine hasn't been around me in months and is very demanding. I simply cannot listen to her give her grandparents a hard time and ignore her. I can't tell her to go away when she needs help using the potty or getting something to eat. It's not the same being here while I work, even if I am still paying my mother for daycare.

Each day, it does get better, though. I keep telling myself that all will be well at that magic 30 day mark. We've been through a lot of change and it has always held true - no matter how difficult the change. 30 days until it is the new normal.

December 10 & 11, 2011 - Day 70 & 71

6 months, 6 days since diagnosis

We are finally home :)

We got home late last night and the last two days are a complete haze. I am still trying to find all my things and get used to living at my parents. It's odd being home and yet not being home. I knew it would be hard but I'm still surprised at how difficult it is to get used to this change. On the long list of changes, it feels like it should be the easiest. Odd how the closer we get to "normal" the harder the changes seem.

Suddenly, I am not only a full time nurse and mother of a 9 month old but now I also am a full time mother of a very demanding 3 year old. I am trying to reconnect with a husband I haven't been around much for 6 months. I am trying to contribute to laundry and dishes and the endless cleaning that a house requires, especially one that houses a sick child. I am trying to be polite and clean up since I am living in my parents' house. It's great to be back but it's not easy.

My parents bought a new house about 5 years ago so I've never lived here and I feel like a guest. They have been bending over backwards to make us all feel welcome and to help us settle in. I feel ungrateful saying that I desperately wish I was in my own home; especially with all the help my parents have been giving me.

I went back to my house to gather a few things and I just cried.... and cried. It's just a house... but I have called it home for years. While I lived there, I graduated college, got married, and had both my babies. It is full of memories and it is full of our stuff. It's just stuff. After what my family has been through, this is not important. And yet, it is. I cannot describe the emotional battle I have within me... the mourning I still experience for that "other" life we had.

The house we had put an offer on flooded. Seriously. 4 inches of water over the entire basement. The bank hired a property management company and they shut off the sump pump. Now, they're ignoring the problem and the walls are soaking up all that icy cold water. We're back to square one looking for a house.

For now, I am focusing on what's important. My family is together. My family is together for the holidays. My family is healthy. My 3 year old is 1 bedroom over and she is amazing. My baby girls adore each other. We have so much love. It's not hard to count my blessings.

Friday, December 9, 2011

December 8 & 9, 2011 - Day 68 & 69

6 months, 4 days since diagnosis
78 days away from home

Labs showed that Riker's potassium is still too high. We did not get cleared to go home today - they want to do another test tomorrow morning. We upped her Bi-Citra again. She's now getting 15 ccs 3 times a day. Hopefully this does the trick. Assuming her levels are better tomorrow, we'll get to go home.

If her levels remain high, they'll want to monitor her heart rate and make sure her vitals are stable. I don't know if that means a few hours in the hospital or another admittance. Hopefully, we'll get the results we want and we'll be sent home.

Everything is ready to go. We're all packed up and nearly everything has been sent home. My parent's house has been cleaned and prepped. Valentine is set to be dropped off at their house tomorrow to meet us. Jon is here and there's nothing left to do. We're ready to be home.

At every other point, I was prepared for and accepting of a possible hospital stay. I know that is part of the program and I'm ready for it. But, just this once, I am ready to go home. It's been too long and I need at least a short reprieve. I will be bitterly disappointed if I do not get good news tomorrow.

Until then, there's nothing to do but wait.

Thursday, December 8, 2011

December 6 & 7, 2011 - Day 66 & 67

6 months, 2 days since diagnosis
76 days away from home

I really think we're going home! At clinic today, Riker's potassium was high but all the other results were good. We'll be going again to check her electrolytes on Friday and will go home after if they are at acceptable levels. Jon is coming tonight and we're going to pack a car load of things to send home. It's really happening... almost 3 months away from my family and we're going home.

Of course, there is a chance that they will want to monitor her further because of the potassium levels. They always have to be so careful. I am trying to brace myself for the disappointment but I don't think I can this time. For months, I have tried to push my family from my mind. Many days, I didn't think of them at all - just so I could function. I cannot put them out of my mind anymore. I want to be home!

If the potassium levels remain high, it can mean heart problems for Riker. They may want to order an EKG or other diagnostic testing. We have increased her bi-citra dosage from 20ccs per day to 30ccs. I hope that does the trick. I will gladly stay if she needs it but I would just rather she be fine and be able to come home!

We have not been able to secure a house so we've decided to move into my parents' house. They are having it cleaned and it should be a safe place for Riker until we can find our own safe place. Thankfully, they have the space and we'll even all get our own rooms.

I worry, though, about the stress this will put on all of us. Having the kids there full time will exhaust Grandma and Grandpa. I can try to keep them away as much as possible but it's doubtful that I will be able to. This is just another transition, though, and we'll just have to find a new normal.

All and all, they are thrilled to have us and so excited to welcome us home. I am starting to feel more excited about going there, too. It will be nice not to be alone all the time. It will be nice to have some help. It will be nice spending Christmas with them.

Now... just crossing my fingers and toes until Friday. Please send us home!!

December 5, 2011 - Day 65

6 months since diagnosis
74 days away from home

6 months ago, we found out that our baby girl has cancer. 6 months ago, our world was turned upside down and our lives will never be the same. 6 months ago seems like it was a life time ago.

I don't even recognize the people we were last June when we got the news. I'm trying to remember what it was like to be at home, to go out with friends, and to live a normal life. I'm trying to remember what it was like to have the luxury of taking life for granted. Never again will life be the same because we are now forever changed. Changed for the better.

Oddly, the last 6 months have not been so bad. You would think having a baby with cancer would be awful. And our journey certainly had some awful downs but there were far more ups. Riker is an awesome 9 month old baby girl. Our time, every day of it, has been so precious. I have been given a gift that so few people will ever understand. The lens in which I view the world through, now, shows me a beautiful world, indeed.

And Riker and I, we're a little team. I have a special bond with her that I never would have had, otherwise. Valentine and Jon are a little team. She'll forever be Daddy's girl in such a different way than before. Our homecoming will allow us to create new bonds - me with Valentine and Jon with Riker. I am a better mother and Jon is a better father.

As I look back on the past 6 months and feel our journey slowing down, I mostly see only the good memories we have created. I never could have imagined that I would feel so at peace with what has happened when this journey started. We are all very lucky, indeed.

Sunday, December 4, 2011

December 3 & 4, 2011 - Day 63 & 64

5 months, 4 weeks, 1 day since diagnosis
73 days away from home

Last night it hit me how much I miss Valentine. As I was crawling into bed, I saw her picture and I was crippled with the ache of her absence. Her constant absence over the last 6 months. She was only 2 and a half when Riker was diagnosed. Now she's 3. I will never get those 6 months back. I will never see my baby girl grow from a 2 year old to a 3 year old. Every time I see her she looks bigger and talks better. Every time I see her she is older and more mature.

I know we'll get over it. I know that she won't remember it in clear detail when she's older. But I also know that I will never forget. I will always know that, in order to give Riker what she needed, I had to steal time from Valentine. My time with Riker has been a precious gift - time I never would have had if she'd been healthy. But I was still robbed of my time with Valentine.

I haven't been sleeping. I find myself waking minutes after I drift off, heart pounding, ice in my veins... that awful feeling that something has gone wrong or that I've forgotten something important. Last night was no exception - even worse, yet. I tossed and turned for hours before I found sleep and as soon as I did, I was awake again.

I only hope my nightmares end when I am home again.

December 1 & 2, 2011 - Days 61 & 62

5 months, 3 weeks, 6 days since diagnosis
71 days away from home

Clinic went well today. Riker's potassium levels remain high but all of her other blood work came back perfect. We're scheduled to come back next week and if everything remains stable, we can have our next visit a the Maine Children's Cancer Program in Scarborough Maine. If Riker remains completely stable, we're going home.

We'll have to drive back down the week after for another visit, but, we'll be able to go back to Maine for two full weeks! Finally, we've made it here. Riker is back to her normal self and we'll be able to be a family again.

For a while, we'll need to come to Boston every other week and we can do every other week at MCCP. Eventually, we'll do more visits in Maine and less in Boston. I assume that we'll keep coming pretty frequently to Boston as they manage her cyclosporine levels and start weaning her next month.

For now, home will be with my parents. We're having someone clean the house and we'll try to find a new normal until we can be in our own space again. This is not optimal but it's far better than the way we've been living for months. This is going to be good.

We're still very hopeful that we'll hear about the house soon. More likely, we'll have to wait until January for an answer but we're still hoping. In the meantime, we'll be together and it's a step closer to being where we want to be. Right now, there's only one real thought on my mind.

We're going to be home for Christmas!

Thursday, December 1, 2011

November 29 & 30, 2011 - Day 59 & 60

5 months, 3 weeks, 4 days since diagnosis
69 days away from home

I feel like I'm starting to lose touch with reality. I have not left this room and have not talked to anyone but Riker in days. Riker is not sleeping well and night and neither am I. I'm feeling lonely and isolated and Riker is clearly getting bored. She's used to a constant parade of people in her room and listening to me chat everyone up. I'm used to being on the go and socializing frequently.

We have a clinic day on Friday and that will be my first time around people since Monday. This has been in incredibly long week and I'm ready to go home. Soon... and given the opportunity, I'd stay until our house is ready. I need to keep my chin up and push through. This is different, though. Although I've often felt alone since the beginning of this, now I really am alone. There are no doctors, nurses, or social workers. It's just me and Riker.

Like everything else, this will soon just be a memory. I will probably even miss the quiet days when Riker and I were alone. We have some great moments. There are tickles and cuddles and lots of sweet mommy/baby time. Those are the moments I am trying to focus on... capture and hold on to forever.

Monday, November 28, 2011

November 27 & 28, 2011 - Day 57 & 58

5 months, 3 weeks, 2 days since diagnosis
67 days away from home

It hit me today. Riker's going to live. She's not completely out of the woods, yet, but chances are that my baby girl is going to make it. Visions of holidays and birthdays and proms pass before my eyes. I am now thinking about the joys and the heart aches that she will some day know. She's going to be our miracle and she's going to make it.

I can't say that the fear of relapse doesn't haunt me completely. I have to remind myself that, although it could happen, it's not likely to happen. I need to stay positive and continue to enjoy every moment - every gift that my sweet girls give me.

Riker is doing better everyday. Our GI appointment and clinic visit today were simple and routine. She looks great, her labs are great... she's doing great. What was managing critical bone marrow transplant/cancer issues has become managing normal baby issues. Riker has been an absolute delight - playing most of the day, laughing and engaging me. Riker has also started to fight sleeping! How frustrating to have her wake every hour all night long but how reassuring that she only wants to play. Do I really have a normal 9 month old? What a change this is. It is definitely worth the frustration.

Now, the lure of home is much closer. Soon, we'll be sent over 100 miles away from Boston and the hospital that has saved Riker's life. I am scared and hopeful. And my heart aches to have a place to call home when we get there. I crave being snuggled into our warm house decorating a Christmas tree and drinking cocoa with the girls. The house we want to call home is so close that I can taste it. The bank just needs to respond to our offer! In reality, though, they probably will not answer prior to the new year. The holidays are not a good time to get anything done in the corporate world.

But, I will continue to hope because I want to come home and stay home. I don't want to keep moving my family about. Valentine and Riker both need stability so that they can grow and so that we all can heal. Now that Riker's body is healing, we need to turn our attention to our battered family. I need to give Valentine the attention she's been lacking from her mother and help her work though the abandonment issues she's surely developed. I need to reintroduce Valentine to her sister and make sure that they are not resentful or scared of each other. I need to repair what months of separation and severe stress has done to my marriage.

"You were sick, but now you're well, and there's work to do." ~Kurt Vonnegut, Timequake

Saturday, November 26, 2011

November 25 & 26, 2011 - Day 55 & 56

5 months, 3 weeks, since diagnosis
65 days away from home

Clinic was uneventful. The counts were fine - she didn't even need a transfusion. Actually, they're very happy with her counts. That's a relief.

We got to see Riker's primary oncologist today who we never get to see. I love her. She always chuckles and tells me I'm a lot like her. She must be the busiest woman I have ever known and she seems to love every minute of it. (Yes, Mina, she's even busier than you!) Despite the fact she literally runs the entire bone marrow transplant program, she always takes the time to listen to me. She addresses all my concerns and never blows me off. Even though Riker's feeling better than she has in weeks, Dr. Lehman still could see that she's "off."

In case it's an ulcer or some damage to her throat from the acid reflux, she prescribed an oral med that might help. She took the time to hold Riker and talk to her. She made me feel like she was genuinely looking at my baby like a baby not just a cancer patient. She even said the fellow should look in Riker's ears. I have been fighting so hard with the team to treat Riker as a whole child. She isn't just a cancer patient. She can still have all the normal "baby things." I am put at ease by a doctor who does all the things I am so familiar with our pediatrician at home doing.

Dr Lehman will also be the doctor making the decisions about Riker's care once we go home. She thinks will be headed home pretty soon and she also thinks we can get a lot of our care close to home, in Scarborough. She's a lot less worried than some of the doctors have been about how well Riker will do. Yea, she definitely makes me feel better overall.

So, today, the family has left for Maine again and it's just Riker and I. I miss them so much but it's also a bit of a relief when they leave. All four of us cramped in a tiny room for 3 days is a lot. Jon is going absolutely nuts by the time he leaves and Valentine's not much better. When they're gone it's quiet here and I need some quiet. Things will be different when we're all home. Being here is a lot like being stuck in a hotel room. Trapping a 3 year old in a hotel room is a disaster waiting to happen and my husband is just as bad.

So, although I already miss them, I was ready for them to head back, too. Hopefully, I'll be going home to them very soon.

November 24, 2011 - Day 54

5 months, 2 weeks, 5 days since diagnosis
63 days away from home

Happy Thanksgiving!

We have a lot to be thankful for. I have had 5 amazing months with my youngest daughter. I've gotten to know her better than I ever would have if I had been living my normal life and working away from home nearly 50 hours a week. I have 2 brave, strong, phenomenal daughters. My 3 year old is smart and healthy and growing. My husband is by my side no matter what. We have a lot more to be thankful for than we have to be bitter about. I think most of us do, when we really look at it.

It was a good day. We ate warm sticky buns and cheese and pepperoni. We spent time together and we almost never get to do that. We had no where we had to go and nothing we had to do. That almost never happens.

Unfortunately, in the middle of dinner, Riker needed a diaper change and there was mucus in her stool. So, in the middle of dinner, we ended up making our way with a dirty diaper to the ER. Such is the life of a cancer family. I knew that we'd likely be sent home but we still had to sit in the ER for hours before we were released. They wanted to test her diaper and draw her blood for some testing including a blood count which in routine for oncology patients.

At some point, I had a nurse sit with Riker so I could use the bathroom. As I came out of the bathroom, I heard the doctors discussing low blood counts. I said, "you're not taking about, Riker, are you?" They seemed almost embarrassed that I had heard and told me that they were, indeed, talking about Riker. When I asked what was going on, they told me that her counts where all very low. I must have turned white as a sheet and I could feel tears burning hot in my eyes. I felt panic wanting to creep in.

They reassured me and told me they were drawing again. They thought the first draw might have been over diluted with saline. I gathered my wits for a moment and asked them if the oncologist had seen the results and he hadn't. I had to remind myself that ER doctors do not understand cancer, let alone bone marrow transplant. I shouldn't be worried until the oncologist is worried. But the thought was already there.

THIS is my worst nightmare. Any mother of a child with cancer will tell you... we hang all our hopes on those blood counts. They HAVE to be ok. The cancer CANNOT come back! I know people who's children have relapsed only months after a bone marrow transplant. Cancer is not fair. It plays dirty.

In the end, they weren't worried... in the end they sent us home because we were going to clinic first thing in the morning. They'll run cultures on her stool and it's not likely to be anything. We might need a blood transfusion in the morning because although her counts are low, they're not overly low for a bone marrow transplant patient. But, will I every really be reassured? I'll always be looking over my shoulder for this monster who's chasing after us.

November 23, 2011 - Day 53

5 months, 2 weeks, 4 days since diagnosis
62 days away from home

During a diaper change, I notice a "bump" or "bubble" on Riker's stomach. I had to call the clinic and let them know. They didn't sound very concerned but when I offered to take a picture, they jumped at the offer. The bump almost looked like a water drop in the picture.

Apparently, it looked like it could be shingles and they requested we come right in so they could test in. Upon further examination, they were significantly less worried but still "popped" it and sent it for testing.

An infection like shingles would likely kill Riker. She shouldn't be exposed and everyone she's around has either been vaccinated or has already had them. I am scared to death that after all this fighting a little infection could be the end of it.

Any mother with a baby at home worries about every bump, every cough, every rash. I'm not any mother anymore. The bumps, and coughs, and rashes... a change in behavior... it could be our only clue before Riker gets really sick. And if Riker gets sick, she might not make it. At this point, the chances of her getting an infection that kills her are far higher than the possibility that she'll relapse. It's enough to drive me crazy.

November 21 & 22, 2011 - Day 51 & 52

5 months, 2 weeks, 3 days since diagnosis
61 days away from home

Things are falling into a pattern here at the Ronald McDonald House. I thought I'd be lonely be the days are nice with just Riker and I. I am able to get more work done and it's not so hard to keep up with all her care when there are not any distractions. I'm surprised that things are going so well.

The nightly routine of drawing up all of her meds is even not so bad. I am up to 25 syringes a night. I have never been more thankful for that g-tube! I cannot imagine trying to get her to take all those meds orally. We'd be fighting over meds all day.

We had our first clinic visit and it was not too bad at all. Riker's potassium is still high so they doctors have put her back on the Bicitra for her electrolytes. We were worried that it was the cause of her throwing up right before she was re-admitted but she seems to be tolerating it just fine. She's a rock star.

The Thanksgiving holiday approaches and Jon will be bringing Valentine. It's strange to spend it away from home. Ever since Jon and I got the house, over 5 years ago, we've hosted Thanksgiving at our house. Last year, right before Thanksgiving, we lost Jon's father to cancer and the holiday just wasn't the same. Now, the family is short 4 more at their table.

Regardless, I look forward to seeing them and spending a little time together. We'll go over to the main house and make ourselves a plate so that we don't have to cook. Jon will be bringing some of the traditional snack food for the day. It will be nice to be together - even if it is just the 4 of us.

Sunday, November 20, 2011

November 19 & 20, 2011 - Day 49 & 50


5 months, 2 weeks, 1 day since diagnosis
59 days away from home

We are half way to day 100. We're 1/4 the way to day 200. We're 1/8 the way to being free.

Things are good. We've settled into the Ronald McDonald House and Riker seems to be back to her normal self. Having the entire family together was wonderful and I can't wait to have them back down next week for Thanksgiving.

We went back to 6 West for a blood-tube and level test today. Riker's sodium levels are good, her cyclosporin levels are good and they adjusted up her magnesium by a small amount. We're good :) Our next visit to clinic will be in two days on Tuesday.

Riker's still not eating - all her feeds are through her g-tube and they're going very well. I have been trying to offer her food right before and during her g-tube feed, though. I figure, we don't need to put her back on the bottle since she's already 9 months old. She's not interested in having me feed her at all but she's getting a little bit better at trying to feed herself.

Well, today, we had a HUGE milestone. Apparently, she knows what to do with her sippy cup! She didn't drink much of the water out of it but just lifting it up is a very big deal. She's not eaten in months and only rarely seen a sippy cup. I am thrilled.

I hope I will only have happy updates to share going forward. I am sure that there will still be bumps in the road but I am hopeful that we are now on the road to better days.

Friday, November 18, 2011

November 18, 2011 - Day 48

5 months, 1 week, 6 days since diagnosis
57 days away from home

We're out. And we're together as a family. It's hours away from home but anywhere can feel like home when you're together.

It wasn't an entirely easy day. It was a long process getting everything set for discharge. Valentine hasn't slept well in days so she was particularly difficult and oppositional. Jon is stressed and tired and hates to be away from home. Riker is still fussy. But it was still a good day.

Riker's now getting a sodium supplement added to her feeds 3 times a day and that should keep her levels stable. We'll go in on Sunday morning for a blood draw to make sure but they're not expecting any further problems at this point.

Even though the discharge went smoothly, we didn't all get back to the Ronald McDonald House until after 5. At that point, Riker was late for 4pm meds and late for a 5pm feed. This meant we did a lot of rushing about trying to get everyone and everything settled. And we did it. Our family was a team. It was amazing not being a one man show for just one day.

By 9:30, both the girls were asleep and all Riker's meds were drawn for the next day. Now Jon and I are just sitting together, listening to the sound of our babies breathing soundly. The room is quiet but not too quiet. Everything is perfect.

We're wiped but there are more meds to be given at 11 - so that's when I'll go to bed. Then back up at 5 to do it all over again :)

Thursday, November 17, 2011

November 17, 2011 - Day 47

5 months, 1 week, 5 days since diagnosis
56 days away from home
day #2 of current hospital stay

I had another melt down today. Riker's still in the hospital. For all intents and purposes, there have been no changes. Their close to managing her sodium levels and will be adding sodium to her feeds. I think we'll be discharged tomorrow afternoon at the latest.

The attending on is the same attending who's been on for nearly 2 weeks. She's the very attending who saw us through my worries about Riker. She was going to discharge us last Friday and every day after that until we were finally discharged on Tuesday. I don't think she's a fan of me and I'm most certainly not a fan of hers.

She was not pleased that I did not call when Riker threw up. She wasn't very gentle about telling, me either and made me feel like a failure. Only 14 hours out of the hospital and I didn't make the cut. She also asked me about how I mixed the formula and requested that I spend the night at the hospital so they could "watch me" take care of Riker. She wanted to make sure I could properly measure and mix the formula. She made me feel very small.

I ended up in Riker's very empty hospital room sitting on the floor bawling my eyes out. Riker was sitting on my lap also bawling her eyes out. Then one of the nurses came and and took her from me and told me to go take a walk. I felt like a crazy person. A couple other nurses came in and they were all looking at me funny. They told me that they didn't think I was crazy. They told me that they thought I was strong and that I was capable and blah blah blah.

Well, now my confidence is shaken. It wasn't very strong in the first place. Being home with a sick baby who needs round the clock meds and feeds off a constant pump that puts food directly into her belly is far from easy. I feel like I might not be able to do it. I really don't think I'm strong enough after all. I feel like throwing in the towel.

Clearly, I will not do that. I will keep moving ahead on step at a time. But I'm tired. I'm so tired.

Wednesday, November 16, 2011

November 16, 2011 - Day 46

5 months, 1 week, 4 days since diagnosis
55 days away from home
day #1 of current hospital stay

The last 24 hours have been tough. It started with discharge in the late afternoon yesterday. Then a fearful night's stay alone with Riker in a strange place. Finally ending with being re-admitted to the hospital after a scheduled clinic visit the next morning. Fantastic.

Our stay at the Ronald McDonald House was not easy. I have to prepare and give meds every few hours. I have to hang feeds and take them down every few hours. I'm always cleaning, mixing, or preparing feeds or meds. Riker has almost a dozen different meds at varying times and amounts. And they're not cheap. Some of the meds are only good for 14 days, too. All the time, she is constantly crying. Sometimes she's sleeping but it feels like mostly she's crying. It's even more exhasting than coming home with a newborn.

So here I am - alone and scared. Every little thing has me in a panic. Should I call? Is this ok? Am I doing this right? I've never mixed formula before - you'd think it'd be a no brainer - except I didn't have anything to measure the formula in or store it in. For some reason, I'm suppose to mix about 16-20 oz at once and store it in the fridge. In what? Well, we didn't think of that. I went to the main house and all they had was glad disposable tupperware. I suppose I could mix the formula in that. Odd...

I finally did find a gallon pitcher to store the formula in. Except when I shook it EXPLODED with a long bang all over the kitchen. ugh...

Then to top everything off, Riker threw up her 8pm feed at 11pm. I was just hanging her next feed and she started to throw up in her sleep. And really throw up at that. She hasn't thrown up in months. It was a lot, too. I think it was her whole feed. Do I call? Why didn't she digest any of that last feed over 3 hours? No, it will be ok... we have a clinic visit in the morning. Is her G-tube looking redder? Is it infected? It'll be ok... we have a clinic visit in the morning.

In the end, it was fine. We were readmitted because Riker's electrolites were off. Everything else is fine. Her sodium is down and her potassium is up. She essentially needs more salt in her diet. If her levels drop too far or too fast, they can cause seizures. So they just wanted her to be observed while they trouble shoot the problem. In an older patient, they'd just tell them to go home and eat some potato chips. So... it's pretty much just a very long day and a harmless pain in the ass.

And, unfortunately, this still does not explain what is wrong with my baby.

Jon and Valentine were already on the way so they're here now. Needless to say, the change in plans was quite disappointing to them. However, I'm trying to soak up the time with them. Looking on the bright side, it would be harder to do so if I was constantly drawing up meds with Riker screaming in the background. And it's always difficult having Valentine outside of her routine. Getting her to sleep in a strange place is close to impossible. I hate having to discipline or fight with her in the short time we have together.

Hopefully, Riker will be discharged again tomorrow. Hopefully, we'll have a short time to enjoy being a family again before the other half heads back to Maine.

Tuesday, November 15, 2011

November 14 & 15, 2011 - Day 44 & 45

5 months, 1 week, 3 days since diagnosis
day #54 of current hospital stay

We were discharged today. We're finally settled into our tiny little suite at the Ronald McDonald house. I have a kitchen and I can make my own food. It's like a little home. A home without the rest of my family doesn't feel much like home, though.

Riker hasn't really improved. She's had a few moments where she smiled and played in the last two days but mostly she's cried. She's even having trouble putting herself to sleep lately. So, mostly she cries.

The doctors "humored me" again and did blood cultures on Riker. She had a temp consistently of just over 99 yesterday and that's high for her. The attending oncologist said she didn't want to send out cultures because there's a greater chance that the culture would be contaminated than to actually show if she had something going on. What a load of crap. Does that mean that all the cultures they draw are probably just contaminated?

Either way, there's nothing clinically wrong with Riker and they feel that maybe she's just sick of being in the hospital. (um... she doesn't know any different) Either way, there is nothing wrong with her that would make her need to stay at the hospital. We can work on whatever it is outpatient at the clinic.

I don't mean to be so discouraged right now. I should be elated that she's well enough to leave the hospital. So many kids aren't. Some never get to leave.

It's hard to keep telling myself that, though. It's lonely in this room with just my crying baby and me. I can't bring her anywhere.... so we're stuck in here, all alone. I miss my own house, Jon and Valentine. But now I don't even have a house to go to. I am so scared and frustrated and angry and sad.

I held it together almost all of the time at the hospital but at least when I lost it, someone was there for me or someone could be with Riker so I could go somewhere and have a break. Now it's just Riker and I... and I better hold it together because I'm all she's got.

November 12 & 13, 2011 - Day 42 & 43

5 months, 1 week, 1 day since diagnosis
day #52 of current hospital stay

Riker's G-tube pain has resolved itself as it healed but she's still crying all the time. I'm tired and I'm frustrated. I'm scared. I'm starting to feel like maybe the cancer is back. It's irrational - none of the tests show it - but I have nothing rational to hold on to. I'm starting to feel like a crazy person. Why is she crying all the time?

I know that transplant takes a lot out of people. I know she's tired. I know food in her belly is probably making her feel kinda icky. I know she's probably teething. Maybe starting to feel some separation anxiety. Maybe it's a combination of a lot of things. She's always smiled through the worst of things. What's a little teething to a girl who's been through chemo?

Maybe I'm just being unrealistic. Her nurse today agreed with me, though. She felt like I shouldn't be going home either. But the doctors are ready for me to be discharged. They're humoring me at this point. Trying to give me more time to be comfortable. But the problem isn't that I'm scared to leave - the problem is that I don't know what to do with a baby who cries and sleeps all day. She's not a newborn. Maybe I need to treat her like one?

I feel lost and confused. I hope that I find answers soon.

Friday, November 11, 2011

November 11, 2011 - Day 41

5 months, 6 days since diagnosis
day #50 of current hospital stay

Riker is STILL in pain. She woke up very pleasant but was inconsolable as soon as I touched her. The GI team is not concerned but did agree that she seems to be in a considerable amount of pain. They actually left the room for 5 minutes while Riker got a dose of IV morphine and calmed down so they could examine her and adjust her tube.

I decided I was not letting her be discharged today. She needs to be here where her pain can be appropriately managed. She's not just getting a little fussy when her meds are wearing off. She's getting down right hysterical. She is in a lot of pain.

I took the time to get more prepared for our move out of the hospital. Josh and I were able to pick up a few groceries and move a few things over. I'm taking the change of plans with stride. This is what it is like to have a sick child. I'd rather have her at 100% when we take her out of here. That way, I can observe subtle changes that could be concerning.

Mothers always know best. When I came back after dinner, she was talking to herself in her crib. She was very pleasant and smiled at me when she saw me. However, when I touched her she started to scream and it didn't get better from there. I called in the nurse and we agreed that her belly was swollen and that she is clearly in a lot of pain.

The doctor ordered an xray to look at the tube and her stomach. They were looking for air in or around the stomach. Thankfully, they didn't find anything terribly worrisome but the do see air in her intestines. They think that this is completely unrelated to her G-tube. After transplant and so much time without eating their bowels get a little slow and they have trouble moving things through. The morphine slows everything down, too, making it even worse. This could be adding to her pain.

For tonight, we'll be stopping her feeds and see what happens. Hopefully, she'll pass the gas soon on her own. If the pain lets up, we could still be discharged tomorrow but my guess is that they will put it off until Monday. Honestly, that's ok with me. These things are scarey even here in the hospital. Each day we are here is a day closer to the next milestone of day 100. When she's feeling better, then we'll get out of here.

November 10, 2011 - Day 40

5 months, 5 days since diagnosis
day #49 of current hospital stay

Riker's pain is not being managed well. When she is not sleeping, she is screaming. She doesn't get IV morphine until she's over the top upset. I want to see her getting pain meds before she is so hysterical. It's so difficult to see her in so much pain.

It's complicated because Riker is being weaned from morphine. They want her on the smallest dose possible. She's also not "narcotic naive." She metabolizes the morphine very quickly and she needs more of it than she used to.

When the night shift came on, the nurse was willing to give her IV morphine but warned me that she won't be able to get IV morphine at home for an ear infection. I told her that I don't think it's her ears that hurt at this point and if she needs IV morphine, she's not ready to go home! I sure hope she feels better tomorrow because I am not taking her home if she's still in this much pain!

Josh came today and we moved a few things into the Ronald McDonald suite. It's very small but there are two beds and a kitchen. We'll be able to make our own meals and it will feel a little more normal. It will be a tight fit and there won't be much privacy but it will be worth having the comfort of being so close to the hospital.

If all goes well, we'll be all moved in the suite tomorrow :)

Wednesday, November 9, 2011

November 9, 2011 - Day 39


5 months, 4 days since diagnosis
day #48 of current hospital stay

Riker got her G-tube today. It took a lot longer than we thought but it's done. No more NG tube. No more tape on her face.

This morning she was very grumpy again. In fact, she was even worse than she has been. Thankfully, her primary nurse was on today. I insisted that Riker was not herself. I didn't want to delay the surgery but I was sure something was wrong. Riker was either sleeping or crying. She would cry less in my arms but she'd just sort of hang there and look around. She wasn't playing much... she wasn't talking or anything... Her cough seemed worse. Her nose was still running like crazy - maybe even worse.

While Riker's nurse was at rounds, I decided I couldn't wait. I paged out. I know that she was going to talk about Riker but I was just not comfortable with Riker's behavior and wanted someone to look at her immediately. It wasn't a lot of help. Maybe she's just teething? I just kept insisting that this didn't seem normal to me. If she was at home with me, a regular, happy baby, I'd take her in to see the doctor. Then it occured to me. If I was bringing her in for these symptoms at home, what would the doctor find? Runny nose, possible teething, irritability? Can we look in her ears?

The nurses said that wasn't something they could do but they'd ask the doctors. I urged them to have that happen sooner than later. Soon after, the skeptical Nurse Practitioner came in to check. You know the ear and eye device that hangs on doctor's office walls? Well, the one in Riker's room didn't even have a plug. They NEVER look in patients' ears. Wow.... So, low and behold, guess who has an ear infection? That explains a LOT and feels like an oddly normal baby moment. 3 days of "unexplained fussiness?" Hasn't almost every mother gone through that? Feeling bad when they finally make it to the doctor's office only to find out their child has a raging ear infection? Well, hopefully this means Riker will be back to normal by tomorrow night.

The G-tube procedure went off perfectly. The tube she has had in up until now is an NG-tube. This stands for Nasogastric Intubation. In other words, a tube that goes in through her nose and down into her stomach so that she can receive feeds through the tube. The G-tube is simply a Gastric feeding tube. It is a tube that goes directly into her stomach for long term feeding needs.

It's not expected that Riker will be consuming all the calories she needs by mouth anytime soon. She can consume as much as she wants by mouth and be supplemented by her tube for anything she's missing. When she finally does consume what she should, (or nearly what she should) we do not have to use the tube anymore. It can be removed as early as 6 months to a year from now.

The tube she has in right now is called a PEG. It is a basic tube coming from her belly that we will use to give her food and meds. In 4 months, when it heals, we'll put in a Mic Key. This will be more like a little plastic button and be significantly less obtrusive. The G-tube is not sterile and she'll be able to bathe or swim once it is healed. Until her central line is taken out, we won't be doing any of those things, but, we'll be able to do them once that's out.

So now, Riker is resting comfortably. She has morphine ordered for surgical and ear pain. She's on antibiotics to take care of the ear infection. Hopefully, she'll continue to rest comfortably through the night. In the morning, we'll start seeing if she can tolerate feeds again.

We are on target to be discharged on Friday. Things are all coming together now. I heard back from the Ronald McDonald House and we should have a suite ready for us tomorrow. I've asked Josh to come down and we should be able to get ready for Riker's discharge. I cannot believe that two days from now, we might be walking out of this hospital.

November 8, 2011 - Day 38

5 months, 3 days since diagnosis
day #47 of current hospital stay

What a day. Riker has been very grumpy today. We have a nurse we haven't had before and he doesn't know me or my baby. I hate having a new nurse when I've been in the same place for nearly 2 months. It's hard to convince them that my baby doesn't cry for no reason.

Of course, we did not have the G-tube put in today but we have it on the schedule for tomorrow at 10:45 am. We'll stop her feeds at 4am so that we're prepared for surgery whenever they are able to take us. I can't wait for that tube to be put in. She nearly pulled out her NG tube again today and actually succeeded at pulling it out most of the way. I HATE that tube.

After the tube mishap with the tube, I ended up having a falling out with her nurse. I like him - he's a gruff Scottish man who's clearly been doing this job for a long time. He's confident, efficient and knows what he's doing. He also does things differently from all the other young girls that work on the floor. Instead of ordering the normal x-ray to make sure Riker's tube wasn't in her chest, he pushed air in her tube and listened for it in her stomach. You mean she doesn't need an x-ray 3 times a day when she pulls that damn tube out? Rock on.

Afterwards, he was on his phone (it's the pager they carry with them at all times) and I said something to the nursing student he was working with. "You may not be taught this way when you train for a real job because he's kinda old school but he clearly knows what he is doing." He put his phone call on hold. "Excuse me, what did you say?" He was clearly not impressed and I had probably overstepped my boundaries. What an excellent teaching opportunity to show the student that parents don't always know what they're talking about? Anyway, I stumbled through an explanation of what I had said and blushed through my embarrassment at his obvious anger. He told me that wasn't correct and that what he was teaching was exactly how she'd be taught. (If that was the case, why have we had a dozen x-rays since we've been on this floor? That doesn't seem to be very cost effective when there is such an easy solution. There isn't an established protocol on this floor?) Then he very gruffly announced that he'd order an x-ray if that's what I wanted. I said "Obviously, I've offended you and I apologize." "You haven't offended me. If you want an x-ray, I'll order an x-ray." "Actually, I'd prefer you didn't order an x-ray." An awkward and unnecessary exchange to have with her nurse.

Then, to add to the stress, there's the problem of where to stay when all this is over. We're supposed to stay at the Ronald McDonald House upon discharge. I have so many questions. How big is it? What is in the suite? Who cleans it? How much time will we be given to move in? Does the family moving out move the same day we move in? Or is there a day between? I hate not being able to plan.

Since Riker is getting her G-tube tomorrow and we'll be discharged 2 days after that, I wanted my brother to come and help out with anything that might need doing prior to and during discharge. If we can't get into our suite early, at least we can get him a room at the RMH and we'll have a presence as a reminder that we'll be leaving the hospital soon.

So... I call today to make sure he can get a room tomorrow. You'd think that if you had a job at the RMH you might like people. You might want to work with people during the most difficult time in their lives and offer them some sort of comfort. Well, not at this house. Every time I call, I get the rudest people. They make me feel like I am asking them if I can stay at their house and like I am somehow putting them out. This is not how it is supposed to feel when I call.

Either way, there is no room at the house. None. Furthermore, they're not even sure if there will be room on Friday when we're discharged. I need to call the morning of. ugh. I really wanted Josh to come tomorrow... I've spent so much time here with no support and these last days prior to discharge are incredibly stressful. He came all the way from Phoenix to be with me and I could really use him now. The woman I spoke with actually had the nerve to tell me that there are families that need to stay there every week because they have clinic visits. I feel for them, lady, but how is that my problem? Why do I have to feel bad for asking if I stay? She could pretend to be sympathetic to my plight, too.

So, even though they say they have no room, I'll try again tomorrow. Maybe Josh can come at least a day before discharge. And hopefully we'll have a successful surgery tomorrow, too.

November 6 & 7, 2011 - Day 36 & 37


5 months, 2 days since diagnosis
day #46 of current hospital stay

Riker doesn't have to be hooked up to her IV pole anymore :) We've converted all of her meds to oral and she's pretty much ready to go home. Unfortunately, we were not able to get her G-tube surgery scheduled for Monday like we originally thought. Booking an OR is not easy. It doesn't even sound like we'll get a slot tomorrow. Maybe Wednesday.

Riker's been a bit moodier than normal. I don't think it's morphine withdrawals - she doesn't have any other symptoms. She could be teething. For now, lots of cuddles and walks in the hall. We're having fun playing dress up and going for walks. As typical for Riker, she's stolen everyone's hearts. She enjoys saying hi to everyone and the halls are a nice change of scenery.

Speaking of "hi," Riker has learned to wave. She's amazed that she can do it and lies in bed waving at herself for long periods of time :) She doesn't realize when she should do it and won't do it on command but always does it after we stop trying to get her waving. I love the way babies learn to wave backwards - soo cute.

Her night CNA has been driving me nuts lately. The woman is very kind and sweet but boy is she clumsy with the babies. Every night she wakes Riker up taking vitals and changing her diaper every 4 hours. Riker does not need her diaper changed that much. This morning, she changed Riker's diaper at 6am. Um... yea... that woke her up on the wrong side of the bed. The worst part is that when she wakes up upset, she ends up throwing up her feed and sometimes her tube, too! ugh. I spoke with the attending physician and I'm no longer going to have the CNA change her diaper unless there is a compelling reason.

We're trying to get Riker's tube feedings where they should be but it has to be done slowly. She's not getting enough throughout the day, so, she is getting continuous breast milk throughout the night. It seems to be going well but I'm hoping to increase her intake during the day so that we can decrease and eventually stop the continuous at night. (At some point, hopefully she'll start taking in calories by mouth, too)

I have 2 months worth of breast milk saved up for her and she has about 4 months left until her 1st birthday. I'm starting to give her some formula each day to supplement my breast milk and get her through her first year. We started on Enfamil this weekend but I don't believe it went well. Perhaps that's why she's been so fussy. We're going to try Similac sensitive tomorrow and see if that works better. Either way, we need to find a solution that works for her - there simply is not enough breast milk to last her.

Although I am eager to be out of here, I'm grateful I have time to troubleshoot her feeds while I'm here. I'm glad that I am not doing it all on my own at home. I'll be home soon enough, either way :)

Sunday, November 6, 2011

November 5, 2011 - Day 35


5 months since diagnosis
day #44 of current hospital stay

Riker was diagnosed with AML exactly 5 months ago today. She has spent over half her life in a hospital. At one point it seemed like this was such an terribly long time. Now it doesn't seem like as much, at all. She's doing well. We'll be home soon. She has so much life ahead of her. We truly are blessed. The journey has been worth it. <3

Friday, November 4, 2011

November 4, 2011 - Day 34



4 months, 4 weeks, 2 days since diagnosis
day #43 of current hospital stay

Things continue to go well. We have decided to put in a G-tube. This will take the pressure off of all of us in regards to meds and eating. Riker will go home on a significant amount of meds and going at her with a dozen syringes a day is not helping her oral aversions. With a G-tube, we won't need to worry about her eating or getting the meds she needs to stay healthy. It will have to stay in for a year, but, I imagine she'll be fine after that and we can take it out. This, too, shall pass.

I have spoke to the feeding team and they think I'm doing exactly what I need to/should be as far as eating goes. She'll eat eventually - we're not pushing it. At this point, we're trying to make eating fun and are encouraging self feeding. I don't think I'll push the bottle on her, at all. As her coordination improves, there will be cups and solid food. She'll eat eventually.

I've started to troubleshoot the formula problem. Last time we tried to give her some, she couldn't keep it down. We've started fortifying again to see if she still has an averse reaction. So far it's going ok. If she continues to do well, I will start cutting her breast milk with formula. I haven't decided by how much - it depends on how much I have after doing an inventory.

If all goes accordingly, we should have the G-tube in on Monday. After a few days to heal and make sure all systems are go, we'll be discharged. OMG discharged? I wish I could say I was looking forward to it. It took about 5 weeks to get used to being here. Now I'm used to being here. Another change is not going to be easy. Being away from teams of medical staff is not going to be easy. We'll be close to the hospital, though. We'll be having frequent visits to clinic and all her vitals will be monitored closely. It will be ok. This is not the most difficult part of our journey.

As with everything, I just keep telling myself that it will be ok....repeating it over and over... It seems to have worked so far. Everything is ok :)

November 3, 2011 - Day 33

4 months, 4 weeks, 1 day since diagnosis
day #42 of current hospital stay

A friend lost her son yesterday. Tyler Burdick was only 2 1/2 years old and had his transplant only 15 days before Riker had hers. Today she went home for the first time in two months and she went home without one of her precious babies. She watched him lie in a bed for weeks fighting for his life, unable to hold him or take away his suffering. It could have been us. We could be watching our baby die. I cannot help but put myself in her shoes. I cannot help be grieve along with her.

But it is not us. Riker does better every day. Riker is tolerating her feeds and spends more time awake every day. We'll be discharged soon. I cannot feel guilty, but I do. Like a survivor in a horrific accident, it doesn't seem fair. Why do some babies make it through while others lives are cut so very short? A parent should never have to figure out how to go on without one of their children.

Stephanie and Daniel, Tyler's parents, are in my thoughts today. My heart goes out to them. I hope that, after enough time passes, they can find peace. I hope that they find the strength to go on and care for their remaining two boys. I hope that Dawson and Gabriel learn of their brother and his strength and can somehow help to keep his memory alive.

Wednesday, November 2, 2011

November 2, 2011 - Day 32

4 months, 4 weeks since diagnosis
day #41 of current hospital stay

Riker's not tolerating her feeds so well. No wonder she didn't want to eat! She's been throwing up and I can tell her belly just doesn't feel right. We raised as high as 16 ccs an hour and that's when she really doesn't do well. This is only 1/2 an ounce; so it's not much. The NG tube has stayed in, though. We stopped her feeds for a bit and we're working on the 16 ccs again. We'll keep weaning her up and hopefully working her gut until she can tolerate the calories she needs.

We have decided to put an G tube in. It will make the eating so much less stressful for her and I and it means we can leave the hospital sooner than later. The GI team is coming to consult tomorrow and we could have it put in as early as Monday. The recovery time for this procedure is minimal so, as soon as she starts tolerating her feeds, we will be discharged. Yikes!

We've weaned down the morphine to .5 every 6 hours and we're going to try to push that to every 8 hours. That's progress. We've decided to leave the Ativan alone - especially because she's still throwing up.

Also, the doctors do believe the bronchiolitis is improving. They also noted that an otherwise healthy baby can have a virus and cough hang on for weeks. They are not concerned which is comforting.

Overall, she looks good. She's been more fussy today than usual but I think that's because her tummy feels so crumby. I can still get smiles and laughs out of her so she can't be feeling too bad. If she continues to improve, we may be living in the Ronald McDonald house by the end of next week!

October 31-November 1, 2011 - Day 30 & 31


4 months, 3 weeks, 6 days since diagnosis
day #40 of current hospital stay

How wonderful it was to be home. It was like I never left. I did all the things that I normally did and it was amazing... even down to bickering with my husband and my daughter! I didn't get home and into bed until well after 3am but I was absolutely ready for my birthday girl when she woke me up in the morning. It was awesome... she had no idea I was going to be there! Boy, was she surprised!

We had the housing inspection for the house that Jon had put a bid on. OMG - I love the house. There is minimal wrong with it and we're just waiting for the bank to accept the offer since it's a short sale. The process can take forever but we're really hoping that it gets sped along and that we can get into the house quickly. I'm very scared about the whole process, though. Two houses and two mortgages? We're going to seriously have to tighten our belts to make this work. This would be hard under normal circumstances but much more difficult considering Riker's care. It's also a lot of house. I have no idea how much it will cost to heat and what the electrical bill will look like. Alas, I can't worry about these things now. We'll make it through.

We got to have a small birthday party for Valentine and she was spoiled rotten (we're going to need to work on that when this is all over. less stuff, more love :). We got to go trick or treating and Valentine got to run around in the snow. The visit was short but it was perfect. It even wasn't too bad saying goodbyes.

It was the break I needed and I came back to the hospital feeling refreshed. The nurse says that Riker's bronchiolitis is not really improving which is disheartening but I am certain it will improve. They didn't even try to feed her in the 48 hours I was gone which was frustrating but I don't think she would have eaten anyway. They put in an NG tube right before I came back that she sneezed out in the first 10 minutes. The second was also put in before I got there. After an X-ray to make sure it was placed correctly, we have started breast milk feeds again. We're only starting with 8 ccs an hour which isn't even 1/3 of an ounce. It is a start, though.

The nurses said she had a good couple of days and I even got some pictures from Halloween. I think that the volunteers spoiled her and, of course, Riker loved every minute of it :) It's nice to know she was well cared for.

So I'm back. I'm here for the long haul again. This place has finally become familiar and it's not so bad to be back.

Sunday, October 30, 2011

October 30, 2011 - Day 29



4 months, 3 weeks, 4 days since diagnosis
day #38 of current hospital stay

I decided to go home. I haven't been home in over a month. I have only seen my husband twice since I left and I have only seen my daughter 5 times in that same period. I simply cannot miss Valentine's third birthday. I've already missed so much. I think it's tragic that she's gotten used to having me down in Boston. Good under the circumstances but still terribly sad for me.

The got a ticket for the 6:45 train out of Boston. I was going to travel in the morning and keep my trip shorter but there were no trains available. The train coming in from Portland was delayed by 4 hours, delaying my train by over 2. Of course, I got to North Station an hour early so I sat their for 3 hours. My phone was dead in the first 1/2 hour. I can't believe how easy it was to sit there for 2 1/2 hours and do nothing in a cold train station on a hard bench. Sitting around in hospitals have made waiting around for a train very easy :) It's a lot easier than waiting for test results while you listen to your baby moan and gasp for air.

I did not decide to come home lightly. I really struggled with the decision. Riker needs me. But Valentine does too. I didn't want to miss Riker's first Halloween. And there's always that voice in the back of my head, what if it's her ONLY Halloween?. But I didn't want to miss Valentine's birthday. I've already missed so much. Then there's the house that Jon's already put a bid on. It's a short sale, so, even though the sellers have accepted the bid, the bank still needs to. However, it could happen. I'd like to see the house before we move in. And if things move quickly, I need to sign power of attorney paperwork so that the documents can go through while I'm away.

So, here I am, riding in a train, headed to Portland. It'll be closer to midnight by the time I arrive but that's ok. I'll get to sleep in my bed. I'll get to feel the warmth of my husband. I'd be woken up by the pitter patter of my toddler's feet. What a birthday present finding me there will be for her.

The Child Life staff at the hospital was really great about helping me out with my Halloween dilemma. They had costumes and other Halloween items (blankets, pillowcases, onsies, booties, bibs). I had a little Halloween before Halloween :) Those pictures mean a lot to me. I kinda got to have my cake and eat it, too.

Riker's "cold" seems to be getting better. She's still sleeping a lot, though. Healing up, I hope. We've moved from a constant pump running morphine to a dose of .6 every 6 hours. In a day or two, we'll move to .8 every 8 hours before eventually weaning her. Those doses can be converted over to oral as soon as we're ready to go home. Just one more piece in the puzzle.

They've also

The eating still isn't working out, though. Getting answers from the doctors is like pulling teeth. It's never been more apparent to me how different I am from other people, specifically, the other parents they are used to dealing with in BMT. JUST TELL ME, PEOPLE! I CAN TAKE IT! So, I asked a dozen different ways. How long will we wait for her to eat? what's the next step if she doesn't eat? what are we doing to do next - is this normal? will she continue to stay on TPN or will we take other measures? Will she just stay in the hospital forever if she doesn't eat? Will we try an NG tube here in the hospital - I'm not taking her home on one. Will you eventually put in a G tube? Finally - yes. OK FOLKS Why are we playing 20 questions, again?

So, they finally "confessed" that they were waiting to see how she did over the weekend and then they would revisit the issue on Monday. (They promised to wait until Tuesday since I won't be there.) Ok... if they already knew that, why didn't they share. Because other parents don't want to know! I just cannot imagine. Other parents sometimes think they want to know but cannot handle the answers and worry excessively when given time to think. Other parents don't ask these questions that I ask. Other parents haven't already thought about G tubes. I feel like either one step ahead of the medical staff or walking side by side with them for the most part.

So, I think we may try the NG tube again in the hospital. If we can get a couple of feeds in her, maybe we can get her hungry again? I will not bring her home on an NG tube and the doctors agree. She's a Houdini when it comes to that tube. She's strong and fights it... then has it pulled out in under an hour no matter how well it's taped down. I've watched 3 nurses hold her down while they put on in and tried to tape it down. I cannot do that on my own at home.

If that doesn't do the trick, the next step is a G tube. I think that's where the medical staff is leaning, too. It takes the pressure off of her and I to get her eating. We can enjoy food time without all the urgency. She'll eat eventually. Eventually, she'll be a normal, cancer free child. Plus, it is crucial that we get her to take all her meds and there will be a lot when she goes home. She's a pretty good med taker but that's part of the problem, I'm sure. Who wants someone going at their mouth 20 times a day with unwanted syringes full of fowl tasting liquids?

So, now I can do what I do. I can process this information and make peace with it when the time comes.

There was another big decision made today. One I made for me. I am no longer pumping. Let me confess, the guilt of this decision is overwhelming. I am still pumping plenty - I didn't dry up. But I'm tired. I'm so tired. I think I have enough to get her to the crucial day 100. I have to be supermom all the time and this is one thing I don't have to do. I feel like I'll disappoint my "lactation" friends and support. I feel like selfish, especially when so many mothers struggle so badly with just making enough for their healthy child.

I pumped more than 1/2 time since my baby was 3 months old when she was diagnosed. I pumped through the most stressful days of my life and I really did struggle with supple for a few weeks. And I've pumped exclusively for 2 1/2 months - since my baby was 6 months old. I have to hold on to that. I think I have something to be proud of.

I think I'm going to cut my milk with formula, too. My instincts have been good up until now. I am not confident that giving Riker only frozen milk and irradiating it keeps all of the nutrient properties of breast milk intact. There's no research showing this, however, I have learned so much about what we don't know about breast milk. Because of this, I actually think it might be good for her to get some formula. Now may be the best time to start this, too. Her taste buds have been completely wiped out and nothing tastes the same to her.

So here I babble... I rationalize because I feel so bad. I feel the need to apologize to every mother who struggled and couldn't keep their supply up because I still have my supply. I feel the need to apologize to Gloria and Vicki and all the wonderful girls in my support group who've been there for me through the worst of this. I feel like I need to apologize to Riker who never gets what I was able to give Valentine who was exclusively breastfed for 15 months. This is truly one of the hardest decisions I've ever made.

Those of you who know me well, know that is when I babble the worst... when I just want someone to tell me over and over again that it's ok... that they understand and they'd do it, too, if they were in my shoes. So... I'll stop... or risk going on forever in this circle talk.

October 29, 2011 - Day 28

4 months, 3 weeks, 3 days since diagnosis
day #37 of current hospital stay

Riker has bronchiolitis. A nasty chest cold for a normal baby. A probable ICU stay for an immunospressed baby. Hopefully it won't come to that. But, this explains why the mucus and coughing is not clearing up. She was given an infusion of IVIG today which gives a boost to the immune system and should hopefully clear up the viral infection.

Riker continues not to eat and hopefully the only reason is this nasty bug. No one wants to eat when they are sick. She's still sleeping most of the time and hopefully she's healing up and will go right back to eating again after she kicks this. I am trying not to let it frustrate me.

So... again I wait. I'm tired. I'm homesick. She destats a lot overnight when her O2 drops and it keeps me awake. I am sleeping a very odd schedule where I finally take a nap out of sheer exhaustion around 5pm and wake up around 9pm. Then I'm up for most of the night, trying to squeak in a few hours of sleep in the wee hours of the morning.

I keep telling myself this is temporary and will pass. When it's over, it will seem like it wasn't so long; wasn't so bad. I'm hanging in here. It could be a lot worse - I haven't really hit that proverbial breaking point. Go figure. The quote really is true. "You never know how strong you are until being strong is the only option you have." I think that about sums it up.

Friday, October 28, 2011

October 27-28, 2011 - Day 26 & 27


4 months, 3 weeks, 2 days since diagnosis
day #36 of current hospital stay

Not much is changing from day to day. Riker is seeming more herself each day that passes. We are still trying to get her to eat. I have gotten her to take a very small amount of milk from a cup but no luck with the bottle. I'm not sure we'll ever go back. Either way, I hope she goes back to drinking her milk soon. I hope that trying other foods helps to bring her interest back.

The good news is that Riker doesn't hate solid food. I am not sure she's actually eating any of it and she doesn't open her mouth for it but, as I recall, this is normal behavior for a baby learning to eat solids. I am just trying to be patient and have faith that she will learn to eat - one bite at a time. I am not above letting her try ice cream and cookies if it comes to that :)

Riker's cough is still pretty bad. They ordered another chest x-ray today and it showed that she had bronchial irritation. They still aren't convinced it's not caused by a virus and will be running more cultures tomorrow. In the mean time, they are giving her an infusion of an immune booster in hopes that it will help her fight off whatever is going on.

Hopefully, when she starts to feel better, her interest in eating will increase. Until then, there's nothing to report. Just taking it one day at a time.

Wednesday, October 26, 2011

October 25-26, 2011 - Day 24 & 25



4 months, 3 weeks since diagnosis
day #34 of current hospital stay

X-ray is clean. Cultures are clean. Riker continues to be a coughing faucet of mucus but it is not an infection. She is tired and sleeps a lot but her poor body has been though a lot and is healing. Overall, she's doing well. Her x-ray showed that she is retaining a lot of fluid still and that it is putting pressure on her lungs. I didn't need and x-ray to tell me that. She's still up over 2 lbs over what she should be. I know my baby. The good news is that her weight was down today. She was down over a quarter of an ounce from yesterday and over 6 ounces from her largest weight. We're headed in the right direction.

Today they went down on her morphine to begin the weaning process. She seemed to tolerate it well. They will keep her at this dose tomorrow and we will continue to monitor.

Still, the only major issue that remains is getting Riker to eat. She continues to show no interest in a bottle. I have my brother shipping me the sippy that I got for her but I have doubts that will help. I also have my breastfeeding support group looking into syringes and tubes which might just work since she has an obsession with her tubes. In the meantime, the doctors suggested I try to get her interested in solid food as an intro to food. Mind you, Riker has not had any solid foods to speak of. These are exciting times for us and I will try not to be discouraged when she does not enjoy/take the food. Counter intutively, they suggested puffs or teething cookies. The doctor said, "we encourage junk food on this floor." Typically, it's the only first foods they can get BMT patients to eat. Here's hoping.

I have a very ripe banana in my room so I tried rolling it in some crushed cheerios for her. I don't have spoons and I highly doubt she'd be receptive to them at this point. I am trying very hard to make this an enjoyable experience for her. I have heard horror stories of children so sick of the spoon coming at them they they refuse to eat for months. Thankfully, she did enjoy the experience. I don't know if she actually ate any of the banana but it's a start.

Later, I ran over to Whole Foods and picked up some other supplies - puffs and teething biscuits (the least I can do is get her the better ones with less ingredients), an avocado, some whole milk plain yogurt and some dreaded jars of baby food. I made all of Valentine's baby food and I intend to do the same for Riker. Unfortunately, that's just not practical here in the hospital. One jar of sweet potatoes won't hurt :) We'll be out of here shortly and I can make her baby food til my heart's content.

So, we'll see what tomorrow brings. We'll keep offering a bottle and try the sippy or even a regular cup. I will keep offering food both for her to self feed and on a spoon. I will do my best not to push any of these as not to create an aversion. This is the last threshold to overcome before we can leave the hospital. If I have missed anything I can try, ideas are welcome :)

Monday, October 24, 2011

October 24, 2011 - Day 23

4 months, 2 weeks, 5 days since diagnosis
day #32 of current hospital stay

Today, Valentine had a small surprise birthday party with my in laws. I can't believe I'm missing so much but I am so blessed to have family and friends willing to ensure that Valentine is so well cared for while I'm away.

When her aunt pointed to the site they took bone marrow from and asked her what happened to her back today, Valentine said, "Oh, I'm just saving my Riker." (Those that know Valentine, I'm sure, can just hear her say that.) So her aunt asked her if that makes her a hero. Valentine then looked up at her aunt very serious-like and said, "Yup. I guess I am!" I am telling you guys, Valentine is growing up 10x as fast while I'm down here in Boston!!

Her birthday is a week from today and she'll be 3. I have no idea what will be happening with Riker at that time or where I'll be. I am trying really hard to focus on what's important and not sweat the small things. As long as we do something small as a family, it doesn't matter where or what it is. I so badly wanted to bring the girls trick or treating, though... it's Valentine's favorite thing to do all year long. She talks about last year like it was yesterday.

Riker continues to be stable and not much will change day by day at this point. We still haven't really weaned her down on any of her meds - I think we may try again tomorrow. The mucus in Riker's mouth and throat is still very thick and causes her to throw up pretty frequently. I'm hoping that lets up in a day or two. I still have been unable to get Riker to take a bottle. I am hoping that will be easier after the mucus clears up.

I have started to pay closer attention to the "little things" like Riker's weight. It seems she's still up 2 or 3 lbs in fluid. She smaller than she was but she's still way up from what she was when she was admitted. Since she hasn't taken much food since then, she probably hasn't actually grown much since then, either. I'm watching for her to come back down to her normal weight.

October 23, 2011 - Day 22

4 months, 2 weeks, 4 days since diagnosis
day #31 of current hospital stay

Riker is officially engrafted. Her ANC count has skyrocketed to an impressive 2,250. This is nearly a normal count and a number she hasn't seen in a very long time. It's exciting and relieving and scarey all at the same time to hit this milestone. The doctors are now talking about preparing us for discharge. The doctors are saying it might be as early as next weekend. In hospital time, that might be closer to two weeks from now, though. I want to leave so badly but at the same time, I'm scared to death of walking out these doors.

The bone marrow takes a lot longer to start making red blood cells and platelets than it does to make white blood cells. Right now, Riker is still needing regular transfusions and will likely continue to do so for months going forward. This will mean long clinic visits in the future.

Tomorrow, we're going to start weaning Riker off the morphine again. They will slowly start taking her off the antibiotics she's been on and have already converted the anti-fungal she needs to remain on to an oral dose that she can go home on. I was surprised to find out that, if they "have to", they can convert Riker's morphine and ativan to oral doses, as well.

The cyclosporine that she is on to prevent graft vs host disease (GVHD) causes Riker to have high blood pressure so they've given her a patch that will be replaced weekly and will give her medicine to help regulate her. Pretty much, the only thing we really need to get Riker to do is eat again and then we're out of here.

I've offered her the bottle several times today and a few times yesterday. The good news is that she's not upset by the offer but the bad news is that she's not interested, either. I hope that in a day or two, she'll want to try a little food. When she's feeling better and taking some calories by bottle, I'm excited to offer her some solid food, too.

So... now... the next big transplant milestone is day #100. That's when we start to wean her off the cyclosporine. That's the halfway point to "normal" if all goes well. So... until then, we keep counting the days. We get out of the hospital, we find a place to call home, we go to clinic for blood tests, medicines, and transfusions. We try to find a new normal amid restrictions and isolation. We work towards living a life where we can push aside the fear and go on.

Sunday, October 23, 2011

October 21-22, 2011 - Day 20 & 21


4 months, 2 weeks, 3 days since diagnosis
day #30 of current hospital stay

My family was together this weekend for the first time in nearly a month. When Valentine saw how much better Riker is doing, she exclaimed, "I DID IT! YEAH!" :) Yea, baby. Your bone marrow is a beautiful, perfect miracle.

Like clockwork, Riker's counts came up on day 20. Her ANC went right past 500 and shot up to 780. On day 21, it went up to 1,630. Only one more day above 500 and she'll be considered engrafted. The transplant is successful and the the riskiest point is behind us.

Next steps are weaning off the pain meds and getting her to eat. We're in no rush. The morphine had been reduced significantly in the ICU and it caused Riker to have withdrawals. We've gone back up to the original dosage and we'll be weaning her much slower. There is no need to cause her any discomfort. Plus, there is pain involved when counts come in. As the marrow grafts and settles into its new home, these side effects will pass and we can really focus on getting her off the pain and anti nausea medicines.

As for eating, Riker's not showing any interest yet. I've started making her 10cc bottles which is a third of an ounce. Since she's not at all interested, I don't want to waste milk trying to get her to take a bottle. At this point, there is still no concern about her not being interested. It should come. If it doesn't, there's always a cup or a sippy to try. We'll get her eating again.

I continue to be frustrated with things at the hospital, however. I know that overall they are a fantastic hospital and bottom line is they save lives. The could do better, though. Today, I found a pill in our room. Valentine had played all day on the table in Riker's room and when she left I found a pill. Lately, she's taken to putting everything in her mouth. I couldn't believe it. I had the nurse call pharamacy and it turned out to be Reglan. It's relatively harmless but what if it had been a narcotic? Or chemo? They really need to be cleaning better between patients.

Then, I went into the family resource room to print something on one of the computers. There was a little boy in there with his mother. He had one of the worst coughs I have ever heard. And his mom was wiping snot from his nose and then thumbing through the movies. I asked her if he was sick and she said he only has a cough. When I complained to the nurses, they said that he was ok. However, coughing and wiping snot, touching things and spreading germs is not ok on an oncology floor. What is causing the cough and snot may not be contagious but that doesn't mean that there are not germs in all those secretions. ugh.

So, for now, we wait again. Not much should change for the next few days. This won't be our home for much longer. Hopefully, we'll be discharged in 2 weeks or so. Hopefully, Jon's finding us all a place to call home very soon.