October 11, 2011 - Day 10

4 months, 6 days since diagnosis
day #20 of current hospital stay

Riker is doing better today. Her mouth sores continue to bleed and cause her trouble breathing and tremendous pain but she seems better than she was only a few days ago. After a very rough night, the doctors decided to take her NG tube back out because it might be causing her irritation making it more difficult for her to breath. What a difference! Finally, she is sleeping and breathing much more comfortably.

Because the mouth sores are so bad, they have decided not to give her the final dose of methotrexate. This is one of the major drugs that causes all the mouth sores. Thankfully, they will not be getting worse on day 11, after all. Also, this should cause her counts to come in more quickly. Come on Riker!! You can do this :)

October 10, 2011 - Day 9

4 months, 5 days since diagnosis
day #19 of current hospital stay

We've been having a difficult time keeping Riker comfortable. Her mouth sores are just awful and constantly leak blood that is impossible to keep cleaned up off of her. Most of the time she is just letting out a constant moan. The doctors have been assuring me that we will do more to try to keep her comfortable.

Her fever has not come back and the high blood pressure is very likely from the pain. Still, the staff here all assures me that what Riker is going through is completely normal. She will bounce back when the marrow grafts. Hopefully no more than 2 weeks from now and she'll be back to the baby we all remember.

Valentine has gone home again and life will go back to "normal" again here in Boston. I feel as though I have caught my breath again - Valentine has a way of both giving it to me and taking it away :) As day #9 ends, I look forward to day #10. This should mark the half way point for the truly horrible part. Counts should be coming up in the last 10 days.

October 9, 2011 - Day 8

4 months, 4 days since diagnosis
day #18 of current hospital stay

These are the not-so-pretty days of transplant. These are the days where people who want updates may not really want updates. These are the days when I do not have any pictures of a baby smiling through adversity. I still have pictures. These pictures are still of the same strong baby they always were. But, these pictures are not pretty.

Valentine came down for a visit today. I needed to see her so badly. Riker, however, was still amid fevers, vomiting blood, high blood pressure, and in obvious discomfort. Still, these were expected symptoms and both of my daughters need me for every different reasons. The video below was taken moments before I had to leave Riker to be with Valentine. Riker is trying to play through the pain... she is unable to open her eyes due to swelling and she is drooling spit mixed with blood. She is moaning in discomfort but still trying to play.

I remind myself that these days were not meant to be pretty and that we all must carry on. Then I take a deep breath and walk out the door for a few hours so that I can be there for Valentine, too.

October 8, 2011 - Day 7

4 months, 3 days since diagnosis
day #17 of current hospital stay

It feels like we've been in this small room for a lifetime. It feels like I'll never see my family again, never get to go home, and even worse, never get out and live a normal life again. I'm feeling down and sorry for myself again. I'm feeling sad and angry and not at all grateful for the hand I have been dealt. Selfishly, that's only what I'm feeling about me. Do I feel the same for Riker? Sure. Of course I do. But I also feel that way about me.

I keep waiting for that magic moment where I'll adjust and this will become normal. It has to, eventually. Then, I can step back and appreciate this moment for what it is. Again, I can appreciate that the situation could always be worse and that I really am blessed. Right now, I don't see how this could ever feel normal or ok... I'm simply crawling out of my skin with loneliness and helplessness.

Again, Riker slept all day today. She wasn't difficult to rouse, per say, however, she was absolutely wiped and did not have any "wakeful time" today. She has not pooped in almost a week and she's clearly uncomfortable. The morphine is keeping the pain at bay but she's still pretty miserable. This morning she threw up and there was blood mixed with mucus and several oral meds she'd been given recently. The mouth sores are more obvious and clearly painful. Tonight she has a fever that's been as high as 102.6.

We've backed off on the morphine so she'll be less sleepy and constipated. We've given her meds in hopes she'll poop soon and that should alleviate some of her discomfort. She's been given Tylenol and the fever's come down. I'm assured all this is normal and no need for concern. She's been taken to the brink of death for this transplant and now we're keeping her alive while we wait for Valentine's magic seeds to plant in Riker's bones. All we can do is treat each obstacle as it happens and try to keep her comfortable.

There is nothing to keep mom comfortable, though. There is no drug or word that can keep me from feeling everything she feels. Here I am, helplessly watching my baby struggle for her life. Here I am, helplessly watching my husband and other baby live their lives back at home without me. Not that I'm implying they don't miss me - I just miss them terribly.

For now, I just keep trying to look at only the next moment or day... I try not to think of the months and months ahead of me yet. I try not to let the hopeless thoughts creep in. I try to remember why I am grateful for today and grateful for all that I do have. I'm trying to find that silver lining and waiting for the moment when the clouds part and the sun creeps back in.

Rarely do I share pictures or videos of the truly tough times. Today, I will share a glimpse into our lives here at Children's Hospital Boston and what Riker and I are enduring.

October 7, 2011 - Day 6

4 months, 2 days since diagnosis
day #16 of current hospital stay

Riker is nearly drowning in her own mucus. I've never seen anyone, child or adult, with so much snot. I woke up this morning to the liquid sounds of her breathing heavy and coughing through it. Her entire face was covered in it. Since then we've been using a hospital grade sucker to keep it off her face and keep her nose clear. Just to be clear - she's not choking on it or having trouble breathing. It is all in her upper respiratory system. It is still awful to see and listen to.

So, I don't like the CNAs that were on her service today. After dealing with all the snot, I wasn't too worried. She does have mucositis. It does have the word mucus in it. So when the CNA comes in to take her vitals she says to me, "oh, does she have a cold?" Ok... a virus could actually KILL a person going through a bone marrow transplant. They do have ways to help treat her if she does have a cold but a cold would be very dangerous for Riker right now. um... why are you asking me??? So, I respond calmly, "I don't know but I'm going to wait for the doctor to tell me." The fact that the doctors didn't even come see Riker until after 1pm meant they were not the least bit worried. They informed me at that time that Riker was behaving exactly as they expected and they continued to be very happy with her progress.

Then, later, the CNA says, "She's still sleeping? Why's she sleeping so much? She doesn't usually sleep this much." Wow.... I don't even know what to say to that... So, again, calmly, I say, "Well, she's on day #6 of transplant. She's taking a lot of morphine and I'm sure that makes her very tired. She's a baby and they already sleep a lot to begin with." Unbelievable.

It's been difficult to find the time to give Riker a bath. She's supposed to get one daily but she's been getting on every other day at best. Between her being so tired and the nurses being so busy, there just isn't much opportunity. I cannot do it by myself because of her central line and all of the tubes and huge IV pole attached to her. I find that I really need to advocate in order for someone to make the time.

Today, I got the CNA to help me and we decided just to clean her up real good in bed since she was so tired. When we got into her left armpit, there was an awful rash. It ran right up into the folds on her neck. I feel awful. I don't know how long it's been there. I always try to clean up in there but I don't force her head all the way up and take a good look. Was it there yesterday when she didn't get her bath? Was it there the day before when she was in the bath but I just couldn't/didn't get a good look? ugh... I feel like an awful mother. I need to be more attentive. These sorts of things cannot be overlooked. These are dangerous times.

The doctor and nurses assured me that it was not my fault and a anti-fungal powder was ordered to treat the infected area. They also assure me that this is normal and it will be fine. I hope they are right. I would never forgive myself if this caused larger problems.

Other than that, though, she's doing well. We are frequently suctioning off any fluids that she coughs up in her sleep and she's resting comfortably. Hopefully we're peaking to the worst of it in the next day or so. I hear that she'll continue to feel this bad for another week or more but hopefully she won't get much worse. Still just counting down the moments...

October 6, 2011 - Day 5

4 months, 1 day since diagnosis
day #15 of current hospital stay

This morning was rough but we were finally able to get on top of Riker's pain again. Her cyclosporine (her immunosuppresent to prevent graft vs host disease) levels are high which is what was probably causing the shakes. So, again, Riker had a good afternoon. She was able to play for small periods of time and even had some physical therapy today.

The physical therapists are fairly happy with her development but are concerned that she doesn't roll over yet. Tummy time isn't easy when your tubes don't reach the floor and you have a central line on your chest. I'm not worried - she'll catch up. She's so close to normal, developmentally, as is. She started sitting up only a week ago in the middle of this awful chemo! She's a superstar :)

Despite my own darkness, I continue to remind myself of all the things I have to be grateful for. Riker continues to do as well as anyone could expect or hope. She is not having any of the side effects that the doctors are watching out for that would cause worry. The symptoms she has now are expected. She does not have a fever or organ failure or trouble breathing. So much could go wrong and nothing is. What we're going through right now is horrible but it is what we signed on for when we came down to Boston.

October 5, 2011 - Day 4

4 months since diagnosis
day #14 of current hospital stay

I don't know how people do this. I am going to collapse under this horrific pressure. I feel like I've been running this marathon for too long and it's only just begun. With every horror we put behind us, we have a new one to face... a greater and far scarier one. People tell me, "it's only for a little while" and "it will be over soon" and "it will all be worth it." But, for me, this is a lifetime. I know that it will be over some day and that it will all be worth it. But, right now, I can't hear that. Right now, I'm falling apart.

Riker is increasing amounts of pain. Her wakeful times are less pleasant and she is clearly uncomfortable. She's needed extra boosts of morphine on several occasions and her constant amount has been increased all ready. She's begun to look puffy like she did when she was in the PICU at the beginning of this all. She seems to be struggling to breath through mucus and the pain. Thankfully, her vitals remain stable and she's getting plenty of oxygen. I still worry, though. I keep looking at her, thinking that she's dying.

This evening, when the nurse woke her to change her diaper, Riker only whimpered with a weak raspy voice. The nurse gave her some more morphine and she just laid there making small noises and shaking. What an awful sight. I can barely push it from my mind.

On top of what I'm dealing with here, I am also getting very anxious about where we are going to stay when Riker and I are allowed to go home. We have still not found a place to live. Jon's kicked it up a notch and we're going to need to find some sort of solution by the end of the month. Even it's only temporary until we can find a permanent solution. I need my family. I don't know what I'll do if I can't go home to them when Riker is finally discharged.

4 months ago, my family received the worst possible news. And so here I am, now, still trying to hold it together. Still trying to take care of mom and baby. Feeling weaker and more out of control as each moment passes. What will tomorrow bring? Hopefully I can rally and find my second... or 100th?... wind. Looking for some inner strength.

October 4, 2011 - Day 3

3 months, 4 weeks, 1 day since diagnosis
day #13 of current hospital stay

The morphine was a big help today. Her previous order was for "as needed" no more than .2 every 4 hours. By 3 1/2 hours last night, Riker was screaming in pain and holding her mouth open like a baby bird. It would take her 15 minutes after she was given more meds before she'd even start to calm down. Now, she's on a constant drip of .1 per hour with a button that will let us give her another .1 every 7 minutes. You can only push that button so often within a 4 hour window but either way, that's a whole lot more morphine. Even without the button it's twice the morphine she was getting.

Thankfully, she's finally comfortable again. She's only crying when she's particularly tired and is doing very well overall. She is sleeping most of the time but that's not really new. Her and I are both grateful for the relief. She even drank 5oz of breast milk today! She hasn't taken a bottle in days so this is a big victory. As usual, she had a good afternoon and spent some time awake and playing. Those moments are the best :)

The IV nutrition was started tonight so she'll get most of her calories and we won't have to worry too much about her oral intake. The doctors say, if there was a bone marrow transplant road map, she'd be right on it. They are pleased with her progress and have no concerns.

So, for now, no news is good news. Just hoping things don't get worse over the next few days. Enjoying the good days :)

October 3, 2011 - Day 2

3 months, 4 weeks since diagnosis
day #13 of current hospital stay

The doctors decided not to put the NG tube back in. It is irritating Riker's throat for it to go in an out so often. Her mucositis is getting worse and the tube is not helping. The good news is that, with the tube out last night, Riker's cough was nearly nonexistent. Obviously the tube is an irritant. So, starting tomorrow, Riker will be put back on IV nutrition or TPN. I would really like her to take at least some breast milk but she simply is not interested in her bottle.

Today, Riker's pain is much worse. We have been giving her more regular morphine but it isn't helping for long. We've begun to see evidence of sores in her mouth and she is making the saddest opened mouth expression when she's in pain. Tomorrow we're going to talk about putting her on a constant morphine drip to keep her more comfortable. I keep telling myself, this is only temporary. We just need to get through one more hour, one more day. Moments drip by like lifetimes when she's in pain, though.

Riker spends most of her day in her crib. She's got a gel pillow to help with possible bed sores. I feel bad, like I should hold her more. But, she doesn't want me to hold her. She either wants to sleep or play quietly by herself. I just don't think she has the energy for a lot of interaction. The moments that she isn't too tired to play are shorter and come less often. I keep worrying that she'll never want to play and be held again. I know that's not rational... when she feels better she'll be normal again. I am still afraid.

Today I started the couch to 2 5k program. I went for my first jog in probably 15 years and it was nice. Boston is a beautiful city, especially this area. It was a wonderful day and I think it helped to get some sun. I ran 1.5 miles in 20 minutes. Not bad for a internet junkie analyst. Again, only out of the hospital room for 1/2 an hour this time but it was a good 1/2 hour. I'm making the best of my time away. I'm gathering energy for the next big fight.

October 2, 2011 - Day 1

3 months, 3 weeks, 6 days since diagnosis
day #12 of current hospital stay

Last night, Riker coughed all night. The kind of cough that keeps a mom up listening. The kind of cough that scares the daylights out of you when you have a nutropenic infant who just under went a bone marrow transplant. I spoke to the pediatrician last night and she didn't think it was anything to worry about because she doesn't have a fever. Maybe irritation from the NG tube? Maybe mucositis starting to bother her throat? Infection is not likely since her and I have been here for longer than 7 days and Jon and Valentine were apparently healthy when they came. Either way, I'm very nervous.

This morning, she had a bit of a rough time. She wouldn't settle when she woke up so we ended up giving her morphine. Then, in her sleep, she threw up the vanco-poly the nurse had sneaked in her NG tube. Certainly, this is the most volatile of the many IV and oral meds she has to take right now to protect her and manage her transplant. It is scarey to see a baby throwing up while they sleep, gagging on their own vomit. Other than that, she slept most of the morning.

As the day went on, Riker's day got better. She was even unhooked for a little while in the afternoon and we played until she got tired again. When she got fussy, I put her into her crib and she settled down. She was quiet, so a while later when I checked on her, I thought she was asleep. Unfortunately, she had pulled out her NG tube and quietly sucking away at it. Putting a new tube in is awful. She hates it. It irritates her throat. She needs an x-ray after. This means about an hour of nothing but her screaming :(

The doctors and nurses decided it would be ok to leave the tube out for the night, at least. Riker hasn't taken anything orally in days and we also wanted to see if she'd take a bottle again. No luck there. She's not interested at all. When she seems like she might be, she ends up crying out. It seems like she's in too much pain to drink. We'll just have to wait and see what morning brings.

On a lighter note, I finally decided to take care of myself. I have been getting down right depressed shut up in this room all day and it's not doing any of us any good. Today I took the first step and went to the gym. I was only out of the room for an hour but it was a good hour and I feel pretty good. I hope to make a habit of this :)

October 1, 2011 - Day 0

3 months, 3 weeks, 5 days since diagnosis
day #11 of current hospital stay

The doctors are calling today day zero because Riker's stem cell infusion was so late last night and ran into the wee hours of this morning. The game is on... the count down until the cells graft is finally here.

I am very surprised at just how much anxiety I had over the impending transplant. I had no idea until the weight had been lifted off my shoulders. Of course, why wouldn't a mother be anxious about something so major? I guess I just though if it was going to be hung like any other blood product and be so simple why should I worry about it? But apparently I was worried. Worried that they day wouldn't come. Worried that Riker wouldn't make it without a serious infection. Worried that Valentine would fall ill and be unable to donate. Worried about my healthy child going through the ordeal of surgery. And then worried about all the irrational things that moms worry about when there isn't anything to worry about at all.

This morning, Valentine woke up around 6 (with about 7 hours of sleep max) and asked me to come back into bed with her. She was lying on her back next to Riker's panda pillow that she likes to sleep with. I told her to move over and she said, "I can't." Typical Valentine being difficult. I didn't argue and I moved her onto the pillow to make room for me. I rolled away from her and started to go back to sleep. After a few minutes, she whined to me, "Mommy, I can't roll over." Poor thing's back was so sore she couldn't move!

I got the nurse to come in and give her some Tylenol. She asked if I thought Valentine needed Morphine but I figured we'd wait and see how the Tylenol did first. About a half an hour later, when the nurse was in to do vitals on Valentine, I asked Valentine to try and get up or roll over. Again, she whined that she couldn't. This time I asked her to just try. The cute thing started to roll over and get up, the entire time exclaiming, "I'm doing it! I'm doing it!" She sounded so surprised :)

Over the course of the day, she felt better and was ready for discharge. By the time they signed us out at 2pm, she was a virtual monster - no longer able to listen or behave. Exhausted and knowing that she was leaving me and Riker soon was more than she could handle. We went to lunch anyway so that we could be together for a while longer before we said our goodbyes. As Jon and Valentine went to leave, Valentine was already crying because she was so moody. When she realized that I was staying in the restaurant and she was going with Daddy, she cried harder. "But Mommy, I need you. Daddy can stay with Riker and you come home with me. You have to come home with us." She broke my heart!!

Eventually, Jon took her and I broke down. I had apologized to the table next to us for causing all this drama over their lunch earlier. Well, those two amazing women got up as soon as my family left and gave me hugs and support. They talked me down from my ledge and gave me words of understanding and encouragement when I needed it most. Sometimes people surprise you - there is so much good in them. They gave me their numbers and emails and insisted I contact them if I need anything at all. And when I needed to get back to the hospital they surprised me again by "stealing" my bill." I protested by they weren't having any part of it. Amazing. I don't even know them.

I miss my family already but the day was good. Riker slept most of the day which is typical for her now. I was able to spend a few more moments with my family together. I got to meet 2 more kindred souls. I'd definitely call this a good day.

*TRANSPLANT DAY!*

3 months, 3 weeks, 4 days since diagnosis
day #10 of current hospital stay
days until transplant -*0*

Today was the big day! Riker finished her last dose of chemo at 9pm last night. Our hope is that this will be the last dose of chemo she will ever receive in her life. This is an amazing milestone in itself.

Yesterday morning, as Jon was packing up to come down, I found out there was no room in the Ronald McDonald House for them to stay and I had a complete melt down. The seemly cold nurses were helpful and reassuring but it had been over 2 weeks since I fell apart and I was due. I didn't realize how stressful it was to have the transplant looming before us. Not only is this a huge, scarey milestone for Riker but my other baby is going to have to endure a medical procedure as well.

All the hotels in walking distance were full and I was in complete panic mode. Thankfully, the resource social worker down here was able to find us a hotel. We stayed at just about the fanciest hotel I've ever been in, too. I couldn't believe it - 16 stories with glass elevators looking down. Fancy food and a 2 room suite. It wasn't easy to get to and we got quite lost a couple times before finding it but it was so worth it - a little respite before the big day.

Valentine had to be in pre-op by 6am for the 7:30 procedure. The nurses and doctors were fantastic with her and got her to stay relatively calm for vitals. She was given an Elmo balloon and a sweet turtle to go into surgery with. She got to choose bubble gum as the scent of the mask she would wear to be put to sleep. The wait wasn't so bad.

I went into the procedure room with her and was asked to hold her on my lap tightly with her arms down so that she was kept as still as possible. The nurses held that mask over her face has she screamed and twisted with all her strength. My poor baby struggled for what felt like minutes before she just went limp. They noticed that she went limp faster than I did and they took her from me and placed her in a bed and ushered me out. I cannot even begin to describe how awful it is to be with your child while they are put under for a procedure.

The harvest went well. They were able to get 50% more cells than they thought they would from Valentine with 400% more particles than necessary. We couldn't have asked for it to go better. The recovery from anesthesia did not go too badly but wasn't pleasant, either. Valentine was groggy, grumpy, a bit woozy and spent the first few hours in a haze. She had an IV in one of her hands that she was pretty horrified about. She sucked down 5 oz of juice right after she woke up and she ended up throwing it all up once she got to her room.

Thankfully, she did recover as the day went on and we were able to get food into her and she was able to do some crafts in Riker's room. It was nice to have my family all together, albeit in a very stressful situation. The actual transplant wasn't scheduled until 9pm so we had a lot of waiting around to do. Riker needed to be 24 hours past her last chemo and the blood bank needed to pull all the red blood cells out of Valentine's marrow because my daughters do not have the same blood type - yet. In the coming months, Riker will eventually grow Valentine's blood and she will also have her sister's blood type. Such a special miracle.

By late afternoon, the day had caught up with Valentine and she slept into the evening. She woke up just before we needed to head back to Riker's room for the big event. The cells didn't come until closer to 10pm and the whole thing was as anticlimactic as we had been told :) When you have a sick child, anticlimactic is good. Pretty much, they hung Valentine's cells on the same IV pole that Riker has had all the strangers' blood products on and started the infusion. Had it not been so late, I would have loved to take pictures of the progress. I would have loved to make a bigger deal of it. As it is, Valentine and I didn't go to bed until nearly 11pm and Riker slept through the entire ordeal.

So now the waiting game begins. We have about 20 days before Valentine's marrow grafts and takes seed in Riker's bones, making new blood cells. The next week or so is supposed to be the worst. Riker's counts are completely down and this is where her system really starts to break down. This is where she has a greater chance for infection than ever before. This is the danger zone. All we can do is wait... and hope...

September 28, 2011

3 months, 3 weeks, 2 days since diagnosis
day #8 of current hospital stay
days until transplant - 2

Riker slept most of the day today. She's gotten used to her tube and her Ativan is keeping her comfortable. While sleeping at night, she's getting breast milk continuously. She has not developed any visible sores yet and can play for short periods of time before she exhausts herself. These are all things to be grateful for. It's hard to be grateful since this is so far from what I'm used to but I am trying to hold onto the positive.

I ran into another mother in the kitchen today. We don't see a lot of people on 6 west since no one is really allowed out of their rooms. We talked as she made her 2 year old daughter a peanut butter sandwich. We didn't talk much - that's pretty normal here - people are very closed off. A few minutes later, she came back. Her daughter had changed her mind and wanted toast with butter instead. This time we talked more. She was so angry... angry for her daughter and very obviously angry about her life. I have felt that way often and it's such an awful place to be. It's so hard not to be angry, though.

Jon is bringing Valentine tomorrow and I cannot wait to see them. I miss them so terribly. I think that Riker will enjoy seeing her big sister, too :) We're almost to transplant.

September 27, 2011

3 months, 3 weeks, 1 day since diagnosis
day #7 of current hospital stay
days until transplant - 3

Riker has been crying nonstop for hours. I finally got her settled down to sleep but it has been a very difficult night and a very difficult day. Maybe more so for me than her. Her food intake has gone down so they decided that it would be helpful to supplement her bottle feeds through NG tube. I am disappointed that she's not eating like she should but not surprised and not against tube feedings. We've been through all this before. Plus she won't have to taste all the awful oral meds they are giving her all day long.

Riker did NOT like having that tube in. Not that anyone does, least of all babies. However, the tube was a lot bigger than last time and it did not agree with her. She could not drink her bottle because the tube made her gag. She tried so hard, too, gagging and screaming between drinks. I hoped that after she slept a while that she'd get used to it. She's on regular doses of Ativan for the nausea and it makes her feel pretty good right after it kicks in. I thought she'd have an easier time taking a bottle then. It did not help. And she did not get used to that tube in her nose.

For the last 3 hours, she's been screaming. She's been screaming for so long and so hard that her eyes are swollen shut. Riker never cries anymore. Not unprovoked and for long periods of time, anyway. She is always easily consolable and can usually calm herself down. It was physically painful to listen to her cry like that and watch her struggle with that tube in her nose.

As I tried to comfort her, I, too started to break down. This is the first time I've cried about Riker in a while. When the nurse finally came in, she handed me a box of tissues and took Riker from me. I felt like an idiot for crying over my daughter's struggle. This just added to my feeling of complete isolation here. I have no one. This place is so cold and there's no one here to take care of me. I sit in this dark room all day and most of the time I forget to leave at all.

I knew the nurses would be busier and less attentive here. Most of the time it doesn't surprise me at all. They are constantly administering meds and taking vitals. I was not prepared, however, to listing to Riker's monitors going off for 45 minutes at a time even though I've buzzed out to tell them. I was not prepared to spend hours on insisting that we get Riker ready for the bath they require her to take every day. I was not prepared to have to track someone down to put my milk in the freezer for me and irradiate bottles for Riker. These nurses are beyond busy.

I've hit a low point. I'm so lonely here. I miss my family so much. I miss my Valentine, I miss my husband, I miss my friends. I miss having support and I miss having breaks.

Steptember 26, 2011

3 months, 3 weeks since diagnosis
day #6 of current hospital stay
days until transplant - 4

Riker is really starting to feel the effects of the chemo. She's tired all the time and needs regular doses of ativan for nausea and irritability. She is such a fighter, though. She's been up playing every afternoon and even gives us a few smiles and giggles despite the bags under her dull, tired eyes.

Last night, while getting a couple of her oral meds, she vomited for the first time in over a month. As I held her in my arms, feeling her body tense up and watching her struggle for breath, I felt so helpless. I am poisoning my beautiful, strong, perfect baby. I can do nothing but watch her suffer and try to comfort her in anyway that I can. I KNOW this is for the best in the long run. Good parents always do what's best no matter how much it hurts. "This is going to hurt me more than it hurts you", right? And the truth is it does HURT - worse than anything I've ever felt.

The good news is that she still is eating even if it isn't as much as it was. She's still gaining weight. She does not have any sores yet and her bottom looks perfect. I know that it will change in the near future but I hold on to the fact that she's still doing as well as we could hope for at this particular moment in time.

Steptember 24, 2011

3 months, 2 weeks 6 days since diagnosis
day #4 of current hospital stay
days until transplant - 6

My friends, Aaron and Michelle, brought Valentine to Boston today. When she ran into my arms after getting off the train, I sobbed. I miss her so much it feels like my heart is being pulled out of my chest. She told me she missed me... she held me so tight. Then she looked around and asked where Riker was :( I explained to her that Riker was at the hospital and that she'd see her next week. Of course Valentine wants to see her sister. ugh.

The day was good. It was the first time I had been outside the hospital since Riker had been admitted. We went to the aquarium and spent the day looking at exhibits. When it was time to go, I had to take the subway in the opposite direction as Valentine and my friends. Knowing the goodbye was coming up, I nearly had an anxiety attack. My heart was beating fast in my chest and my blood felt cold. I didn't think I could handle a teary goodbye where Valentine had to be pulled off of me screaming. Thankfully, my train appeared first and I quickly said I had to go, gave V a kiss, passed her to Aaron and ran off. As the train pulled away, I waved out the window, tears running down my face.

Riker had an okay day but the chemo is catching up to her. She's tired and cranky and even spit up a little today. She's not eating nearly as much as I'd like to see her eat and it's so early on in this process. We still have 5 more days of harsh chemo. The side effects are supposed to peak on day 0 - the day of her transplant. Thankfully, the nurses were able to give her a small amount of ativan and she's resting comfortably now. I've been spoiled - her previous rounds of chemo have had little to no side effects. Not only is each progressive round more difficult on her little body but this round is the worst of them.

For now, I take it one day at a time. Each day brings me closer to being together as a family again.

September 22, 2011

3 months, 2 weeks 4 days since diagnosis
day #2 of current hospital stay
days until transplant - 8

I am so tired. Whenever someone looks at one of my tired children and says "oh, she'll sleep good tonight," I think to myself, "you must not have kids." Tired children do not sleep well. Tired children wake up screaming in the middle of the night and refuse to nap. I know it's not intuitive but it's usually true. Well rested children go to sleep and stay asleep much easier.

Last night and today was a constant parade of people through our room. There were vital checks and meds and blood draws and chemo. It seemed that the nurses only left for a few minutes at a time today. Riker started her first chemo dose at 5 am this morning and will have it every 6 hours. She was very moody and wouldn't eat today but I actually think it was from the antibiotic she received last night.

This place is so different than the Babara Bush Children's Hospital in Portland. I feel so lost, lonely, and scared. I didn't leave the wing at all today and barely left the room. I don't have a view of the skyline here, I have a view of the building next door. The sun doesn't really come in the window at all. The staff is very nice and I'm sure I'll get to know them but right now, everyone is a stranger. They don't know me and they don't know my daughter. I want to go home.

September 21, 2011

3 months, 2 weeks 3 days since diagnosis
day #1 of current hospital stay
days until transplant - 9

The last week has been amazing. Riker was home and we were a family. I soaked up every last minute of it and didn't even take a moment to update everyone. The last week has felt almost normal. I was pleasantly surprised to find out that Riker really likes being home. She may have spent over half her life in the hospital but she still rather be at home :)

The best part was watching Valentine and Riker together. They really adore each other. All Riker has to do is look at Valentine to start giggling. Valentine didn't want to leave Riker's side all week. When Riker would cry (which was rarely), Valentine would cry out, "Riker, I'm coming. Riker it's ok, I'm right here!" They break my heart!

Although it was almost normal, there were still reminders that I have a sick daughter. While home, I had to administer IV antibiotics every 6 hours. The antibiotic ran for 2 hours and during that time, I had to carry around a baby and a pump. I had to set my alarm for 3 am and get up again when the pump alarmed at 5 am. I fell into the pattern easily and happily did my part to have her home.

Now we're in Boston. After an exhausting 12 hour day, waiting for hours for a room to become available, we are settled in Boston Children's Hospital. Riker is sleeping and starting her anti-seizure medication. I guess the chemo can cause seizures. The chemo will also likely cause mouth sores, horrific diaper rash, fevers, high blood pressure and other undesirable side effects that I will be helplessly watching. I'm glad I'm finally here but I'm scared as hell.

When I said goodbye to Valentine, she told me she didn't like me anyway and I should leave her alone. I know that she's just confused and sad and angry but... I still wanted something else from our goodbye. I cannot believe I have to be so far away from her. I cannot believe that I will see her so infrequently. She's supposed to come this weekend for a visit and we'll visit the aquarium. She'll be here next weekend for the transplant. I will get to see her but it's not enough. Skype is not enough. I already miss her.

So here I am. I didn't think I could ever make it this far and I did. Now the toughest road is still ahead and I have to be even stronger. I will make it through this for my girls, my husband, myself and my family.

September 12, 2011

3 months, 1 week since diagnosis
day #6 of current hospital stay
days until transplant - 17

Riker's line is in and we're going home tomorrow! Everything is going so well right now. Our transplant has been rescheduled for the 30th and Riker will be admitted to start her chemo on the 21st. This time we'll make it.

Unfortunately, we'll have to go back to Boston on the 15th for more testing. I was really hoping we'd be able to squeeze in so Valentine would not need all the blood work again. No such luck. It was very hard on her the first time so it will be even worse this time. Maybe when she sees how well Riker does with it, she'll handle it better. Maybe.

Either way, the sacrifices are worth it. We are looking forward to better days. We're looking forward to being a family again :)

September 11, 2011

3 months, 6 days since diagnosis
day #6 of current hospital stay
days until transplant - unknown

Riker's line was, indeed the source of infection. Once the line was removed, the cultures have all come back clear. She will still be on antibiotics for 10 days but the infection is clear. Thankfully, we'll be able to put in a new line on tomorrow, and go home again on Tuesday. I'm still not sure when we'll be going to Boston but I'm just so relieved that everything is ok with Riker.

She's been so amazing through having the IVs in her hands. She cannot use her hands at all but she's been kicking her feet and waiving her arms. I'm in constant amazement of her resilience and ability to smile through it all. I love her so much. I feel like we're going to be giving her the greatest gift when she has her hands and arms back. I just cannot wait.

Odd - usually I'd be excited to give my children a material gift. Now it's the gift of time, comfort, and love. This experience really has changed me.