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.


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.