Friday, September 30, 2011


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...

Wednesday, September 28, 2011

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.

Monday, September 26, 2011

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.

Saturday, September 24, 2011

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.

Thursday, September 22, 2011

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.

Wednesday, September 21, 2011

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.

Monday, September 12, 2011

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.

September 10, 2011

3 months, 5 days since diagnosis
day #5 of current hospital stay
days until transplant - unknown

I will be forever amazed at the adaptability and resilience of children. The have an incredible ability to persevere through the worst of times and smile through the process. My daughters have taught me everything I needed to know and and I had no idea I had so much to learn. They are my greatest heroes.

Friday, September 9, 2011

September 9, 2011

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

The good news is we now know that Riker has staph epidermidis which is an infection caused by the bacteria on her skin. This is common and treated easily enough. Her line is out and she can begin to heal. The bad news is, not having a central line means peripheral IVs. While she does not have a line for at least 3 days, she has absolutely no use of her arms or hands. The splints that she wears on each of her arms keeps her from damaging the IVs she has in each of her hands. Poor Roo... she's hanging in there so well but she's so grumpy.

Labs are being drawn for new cultures every day until we're certain the infection has cleared. Although Riker can get all of her meds through her IVs, the labs need to be drawn through a clean prick. At least once a day, she needs to be stuck with a needle while they pull vials of blood for testing. If all goes well, though, we should be able to get a new line put in on Monday and all of this will be behind us. Riker will need to finish out some antibiotics but she should be able to do that at home.

Right now, we're crossing our fingers that we might be going home as early as Tuesday. This would mean an entire week home as a family before we try to make it to Boston once more.

September 8, 2011

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

Today was really rough. It was confirmed this morning - Riker indeed has a staph infection and her central line, if not the cause, is infected. The doctors are very clear that the surprise is not that she got an infection at this point but that the infection took so long. It doesn't mean I'm not very disappointed.

They decided to get her in right away to have the line removed and scheduled her for 5pm to go into surgery. This means no food after her 11am feeding. 6 month olds do not like being denied their bottle. Riker cried nearly all day except when she was so exhausted that she couldn't stay awake any longer. She only fell asleep for brief periods of time. To add to the stress, her surgery kept getting pushed out. She ended up not getting in until nearly 8:30.

For now, Riker is resting comfortably. The surgery went fine and her line is out. The next few days will be very rough, though. In lieu of the central line, Riker now has IVs placed in both of her hands. This means she has huge splits on both of her arms and can barely move them. She certainly cannot pick things up or put her hands in her mouth. I have no idea how she's going to tolerate that until at least Monday when they can place a new line.

At this point, rest is in order. I believe we have a few long days ahead of us before this ordeal is behind us and we can move on to the next step.

Wednesday, September 7, 2011

September 7, 2011

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

The blood cultures have grown what appears to be staph. 1 day from starting chemo for transplant, we have an bona fide infection. She's doing well, though. We couldn't have had a better time for this. Any earlier and she wouldn't have had the counts to fight it off. Any later and she would have already been going through the awful chemo that leads up to transplant. That chemo can cause a fever and certainly would make her feel awful - we may not have known it was an infection at all. Catching it now may have just saved her life.

Unfortunately, however, this means putting off transplant by 2 weeks. It also means that they have to take out her central line and put in a new one. This is the one I'm really upset about. This means another surgery and accessing another major vein. The oncologist assures me, though, that the surprise is not that she needs this procedure but that she did not need this procedure for 3 months. He feels confident that replacing the line will be a good thing before transplant.

So, we'll be here at least through the weekend. I'm still holding on to the hope that the blood culture was contaminated and that she doesn't have an infection, after all. The chances are very low but - who knows?

Tuesday, September 6, 2011

September 6, 2011

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

We're back at the hospital. We were only one day from going to Boston and Riker spiked her first fever. I don't even know what to say.

She was getting cranky yesterday and woke up often last night. When she woke up it was a full on scream every time. I was pretty sure something was wrong - I knew she didn't feel well. I checked her temperature but nothing was out of the ordinary. Then it happened. Late this morning, her temperature was up to 100.3. I had been packing for Boston and there were clothes everywhere. The house was a mess.

I tried my best not to panic and called the Maine Children's Cancer Program (MCCP) to find out what to do. They told me that the "magic" number I was waiting for was 100.5 and that I should call back. I ran around the house gathering things I knew she and I would need if we were admitted to the hospital. I picked up around the house the best I could. The next time I checked, her temperature had risen to 100.7. The oncologist had decided I should drive her the 40 minutes to Portland and be seen in the ER.

I kept it together surprisingly well but asked my brother to drive me so if I did lose it, I'd have someone else driving. I reminded myself of all the things I had been taught about the ER - I would need to advocate for Riker since they so often do not know how to handle a cancer patient.

When we arrived, I had to request that she be seen immediately. The receptionist directed us to the pediatric area where dozens of apparently sick children were. I reminded them that she has cancer and cannot be around sick people. When we were allowed to be seen right away, sure enough, they requested a rectal temperature. Thankfully, I only had to remind them that she had cancer for them to agree that auxiliary would be the best method. Finally, when they did blood draws, I didn't get any trouble about them using her central line. I most certainly would not have allowed them to pick her.

Surprisingly, Riker did not have what they consider a temperature by the time we got to the hospital. It was high for her but not high enough to indicate any major problem. They did give her a dose of antibiotics, just in case, however. They will also grow cultures to see if she has any infection. Because she is so close to transplant, they admitted her for the night for observation. We will not be going to Boston tomorrow and I am not sure when they'll reschedule us to go.

So here I sit - back in the same room we've grown so accustomed to. Riker is finally calm and resting. I have a feeling it may be a very long night. She has been doing a lot Oddly enough, although it's driving me crazy that we have such a problem right before transplant, I am grateful we have this problem before transplant. All her symptoms might have been attributed to the chemo. Also, her immune system is nearly normal making all of this a whole lot less scarey. Most people go through this with their babies. And, I actually think this all might be her teething. The only time that Valentine had a fever was when she was teething.

With any luck we'll be home tomorrow with a night or two extra to spend as a family. If we're really lucky, Jon will feel better and we can enjoy him, too. I can spend a little quality time with my husband and both my daughters before we head out on this big journey.

Saturday, September 3, 2011

September 3, 2011

2 months, 4 weeks, 1 day since diagnosis
day #34 of current hospital stay, day #1 home :)

We were discharged today! It is so good to be home as a family. We were able to enjoy our going away party at Range Pond with most of our family and closest friends. It's always so amazing to feel the love and support of the people who care so much about us. I feel my batteries recharging from their energy and love :)

Unfortunately, Jon is still sick and running a fever. He wasn't able to enjoy our day out. It's only 4 days until we leave and he's spending it in bed :( Riker has changed so much and the few days he can be with her and enjoy her are being stolen from him. He's going on day 8 of running a fever of over 100. He's been to the doctor's twice and doesn't seem to be getting any better. I am so sad that I cannot be there for him as I normally would and I am so sad we cannot spend these days close. I am very optimistic that he will feel better by the time we leave for Boston. I will surely make sure he goes back to the doctor on Tuesday if he's not on the mend.

On a lighter and more exciting note, Riker rolled over back to front for the first time today! She's 6 1/2 months (5 1/2 months adjusted) and I have been waiting for this moment for a long time. We were at Range Pond and she was surrounded by family. I didn't get to see it but I rejoice that she was able to accomplish this huge milestone outside of the hospital and that so many were able to enjoy it.

During the next couple of days, we're going to try to pack in as much love and fun as we can. I'm hoping that this is the break that I so badly need before we turn around and do it all over again in another state - much further away.

Friday, September 2, 2011

September 2, 2011

2 months, 4 weeks since diagnosis
day #33 of current hospital stay

Riker gets to go home tomorrow! We will have 4 nights at home before we go to Boston! I am so excited that our family can be together for this small snapshot in time. Jon is still sick but he will be quarantined in our room until he is feeling better. I feel so sad for him that he will not be able to spend these last days with Riker and I. I will miss him so much while he's gone.

Tomorrow we're having a big party at a local lake as a welcome home/farewell to Riker. I am so excited to have all our friends and family in one spot - especially Riker. I cannot express how amazing it feels to have both my girls in the same spot. The peace that I feel when I see them together is a feeling I could not have imagined before going through all this.

Deep breath - we are exactly 2 weeks away from transplant. We can make it through this. This road is difficult but when we reach Oz at the end, it will all be worth it.

August 31, 2011

2 months, 3 weeks, 5 days since diagnosis
day #31 of current hospital stay

Jon has pneumonia. I've been so busy with Riker and Valentine and Boston, I didn't even notice he was so sick. Normally, I'd take care of him - make sure he went to the doctor's office and got the meds he needed. Well, last night, he got up in the middle of the night and took his own temperature. It was 103. He took himself to the ER where they gave him and IV and prescriptions for antibiotics and cough medicine. He's so stressed and so tired :( I feel so guilty that I could not be there for him. I miss my husband more than I can express.

Riker ended up taking an ambulance to Boston again this time so I didn't end up needing my brother to help out. We literally drove to the clinic, spent 15 minutes in the office while they took vitals and drew one vial of blood, and then drove home. What a long long day. Boston was an absolute mad house. The Yankees are playing there tonight and all the crazies were out. It's good to finally be back.

Riker's counts are still coming up but not very fast. I'm worried we will not be able to go home at all before we leave for Boston. I will be crushed if we go straight from Maine Med to Boston. I just want my family together for a couple of days before we leave. I remain optimistic - there is still time.