Monday, August 29, 2011

August 29, 2011

2 months, 3 weeks, 3 days since diagnosis
day #29 of current hospital stay

I am so mad. Boston called today. Apparently they couldn't get results from some of Riker's labs and now we need to go all the way back down there to get them redrawn. Are you kidding me?! They couldn't tell me a week ago? Did they really just find out today?! ugh

Jon's sick. He's been in bed with a cough for a few days. He can't drive down with me and be stuck in a car for 3 hours with Riker. Thank goodness my brother can go with me. We only have a week before I essentially MOVE down to Boston and I have things to wrap up. I have time I want to spend with Valentine. This is a trip to Boston that shouldn't have been necessary.

We will go down on Wednesday and I'm sure it'll go just fine. I sure hope that Boston is worth it. I hear good things but they really don't seem to have their act together. They are driving me nuts and not giving me confidence in anything!

August 28, 2011

2 months, 3 weeks, 2 days since diagnosis
day #28 of current hospital stay

Riker's counts are finally starting to recover. She did so well the last two rounds that I really thought we'd be home by now. It seems she still has a way to go and now the best I can hope for is that she'll be home for next weekend. I will be crushed if we don't get to have a couple days at home as a family before we leave for Boston.

The past few days Riker has been so exhausted. The nurses tell me this is normal for a child undergoing chemo. We've been lucky that Riker hasn't had any side effects before now. I am so scared. We're so close to transplant and we're so hopeful. I just can't help thinking of everything that could go wrong. I cannot lose her now.

For now it's just a waiting game. When her counts recover, she should be back to normal and feel better. She's tired but still in good spirits. The nurses all love her and she loves them. Her spirit never wavers. She is truly amazing.

Wednesday, August 24, 2011

August 26, 2011

2 months, 3 weeks since diagnosis
day #26 of current hospital stay

Another trip to Boston today. Valentine went down with us for preliminary testing in order to be Riker's bone marrow donor. It was a terribly long day. There were forms to be filled out and vials upon vials of blood to be drawn. My poor girl weighed .2 kilograms less after they collected all that blood. We had to hold her down while she cried and screamed, "Please stop - don't hurt me anymore."
I was brave at first but I had difficulties choking back the tears when they couldn't get anymore blood out of the first arm and had to move onto the other. She was brave, though. She really might be saving her sister's life and she knows it. I don't know what I will do if this doesn't work. I don't know how I'll explain to my 2 year old that she couldn't save her sister's life.
For now, though, we remain positive. Why shouldn't this work? This has to save my baby's life.

We are now officially scheduled for Boston. Riker and I will go down and we will start conditioning chemo on September 7th. After 9 days of the worst poison she's seen given so far, Valentine will join us on the 16th for the transplant. The count down is on.

The day was incredibly long. We left the house at 8am and ate breakfast on the road. I packed snacks for Valentine but nothing for Jon and I. When we finally got out of there at 3:30pm, we were all exhausted and dizzy with hunger. We ended up stopping at the hospital to see Riker on the way home and it was already almost 7pm. We finally got home after 9pm. What a day.

Saturday, August 20, 2011

August 19, 2011

2 months, 2 weeks since diagnosis
day #19 of current hospital stay

Sometimes the doctors are idiots. Today, the nutritionists came to see me. Now first, I want to say that Riker is doing awesome. She is taking her bottles and she is putting on weight. She is hitting her milestones. She's not ahead - but she's not really behind, either. I would not say that she needs or is even ready for solid foods. She's definitely not interested in what I'm eating and has just started to hold her head up really well. Transplant is only weeks away and she's likely to feel very sick and reject food. I don't want to start solids only for them to become unpleasant next month and have to start over. Breast milk will be the best for Riker through chemo and transplant - it has all the nutrients that she needs and is more gentle on her stomach.
That being said, first of all, they wanted to start solid foods. Nope - not doing it. Next? They want me to freeze my milk in 6oz bags. What? They don't even make bags in that size that I know of. Plus, she's drinking frozen milk from June. She'll be drinking the currently frozen milk well after transplant. The bottles can be made in larger amounts - it doesn't matter how much frozen milk is in a single bag. I told them that we'd already been making 6 oz bottles but she never takes more than 4 1/2 oz or so. We can't force her to eat more and she's gaining weight! ugh.
They told me they are concerned because her weight gain has slowed. (she gained 3 oz last week instead of 4). They said they do a 'baby bmi' as a ratio of height to weight. The last measurement of height was a lot larger and now the ratio was off. Are they kidding me? Now they're upset because she is growing longer? She's gained over 2 lbs since she's been in the hospital? I honestly asked them if they remembered that she has cancer and that she's just come off of chemo. We should all be doing a celebration dance - not worrying about her very adequate diet.
Finally, her oncologist said that if we weren't going to start solid foods, we should at least give her some cheerios. Honestly? I just continue to shake my head. He is concerned that she won't develop her pincher grip. My goodness, she can barely grab and hold her teething ring. Babies don't usually start finger food until they're 9 months old. Certainly not until they've at least had some very watered down baby food. I decided to humor them on this one. Not because I thought it was necessary - just because I thought it might be fun for her to play with a pile of them. It was fun and she was totally uninterested in the entire ordeal.
I wish they'd all just focus on curing her damn cancer and let me deal with her diet. I am doing just fine and they don't need to butt in until there is problem.

Tuesday, August 16, 2011

August 16, 2011

2 months, 1 week, and 4 days since diagnosis
day #16 of current hospital stay
Riker turned 6 months old today. Just over 2 months ago we didn't think she'd see 4 months :)
Not breastfeeding was far more difficult for me than it was for her. She is taking bottles from me without issue. I am now pumping for 20 minutes, taking 20 minutes to feed her and spending another 20 washing up parts and preparing bottles. I am now doing this every 2 hours. I went from feeling her close and feeding her so easily and naturally to cuddling up to a cold plastic machine that, well, sucks. *sigh*
Certainly, I'll stop feeling sorry for myself soon. This will just become the "way of life" as did everything else leading up to this moment in time. For now, I'll mourn my loss - I'll let it in for a little while before I gather myself back up with my head held high.

Sunday, August 14, 2011

August 13, 2011

2 months, 1 week, and 1 day since diagnosis
day #13 of current hospital stay
Today was the last day I will breastfeed my baby. I'm not going to pretend that it doesn't hurt. It does - badly. I breastfed Valentine for 15 months. It was important to me for but no so much as it is for Riker. She's my baby. Likely my last. I wanted to enjoy this for a long time. I wanted to enjoy a lot of things, though. Nothing has been as I planned it. But, this was one of the few things that I have been able to enjoy over the first 6 months of her short life. This is one of the few things that she can be comforted by and that I get enjoyment out of. It's our special time. I know that I will hear all kinds of words of comfort, telling me to not feel bad and that it's ok. I know all of that. I still am saddened and angered that I am being robbed of yet another piece of parenting my little girl. It's all worth it but I am still struggling and I am allowed to be upset by all of this.
I have felt like Riker has done so well through all of this because of our breastfeeding. I am irrationally afraid that she will not do as well if she's not nursing. Sure, she'll still get pumped milk so that should be just as good. How much of it is the happiness and comfort she gets from me, though? I am so scared that by changing even this small thing that she will not do as well.
She'll be 6 months old in a couple of days. Many mothers don't make it past the first few weeks. Riker will be upset for a very short time before she adjusts and then forgets. That's the great thing about babies. She'll likely not have any memories of anything she's going through. Plus, I will continue to pump. I have nearly a thousand ounces saved up for her right now and I should be able to give her pumped milk until she's at least 9 months old. That's my current goal.

Tuesday, August 9, 2011

August 9, 2011

2 months and 4 days since diagnosis
day #9 of current hospital stay

Boston again today. Riker and I went down by ambulance in order to prepare for transplant next month. It was just a simple blood draw and consult with the oncologist. After that, I was able to tour the unit we'd be staying in and get some questions answered.
Really, nothing changed from the last visit. We'll be bringing Riker down the second week of September to begin 10 days of conditioning chemo. This will likely start to make her feel sick several days after it starts, peaking at the 10th day. She will have mouth sores and fevers/infections are almost certain. Valentine will go down and the transplant will take place after these 10 days.
Recovery will take 20-30 days for Riker. Once her ANC counts are over 500 for 3 days in a row, she will be discharged. After discharge, she'll need to be seen twice weekly in Boston for testing for a couple of weeks. We'll likely stay at the Ronald McDonald house during that time. After that, we'll only need to go to Boston weekly or even less. The rest of the time, we can get her testing done in Portland.
Of course, once we're home, we'll still need to remain in isolation until approximately 6 months after transplant. We're looking at being isolated until mid-March.
None of this is really a revelation. We covered this on our last trip. It seems to be more certain, however, and we're getting consistent answers which is a good sign. Transplant is just around the corner now - time to get ready.

Monday, August 8, 2011

August 8, 2011

2 months and 3 days since diagnosis
day #8 of current hospital stay

Today, I was remembering when Riker was born. There is so much hope when a new baby is born. It's a different kind of hope than when your baby has cancer. When your baby has cancer, you are scared to hope. The future is so uncertain. Today, I watched the video of the first day that Valentine met her baby sister. I remember that day so well but it was so long ago and now feels like a dream.

Sunday, August 7, 2011

August 7, 2011

2 months and 2 days since diagnosis
day #7 of current hospital stay

Just look at Valentine's sticker - "Big Sister." I just keeping more and more about Boston and transplant. Today, Valentine spoke to the nurse who was holding Riker. "I"m going to give my blood..." she shook her head " bone marrow to Riker. I'm going to bring my flower blanky to Boston and sleep so they can give it to her." My little girl is so smart and so brave. It kills me that my girls have to be so brave so young.
When all this is done, Riker will not have her own blood anymore. She will have Valentine's blood. I still cannot get my head around this. The bond between my two girls will be on some entirely different level than I ever could have imagined. I am blown away. Valentine really is the most amazing big sister I've ever known. These girls are my heroes.

August 5, 2011

2 months since diagnosis
day #5 of current hospital stay

Riker continues to do well in tolerating her chemo. Little changes day to day at this point. The doctors don't even spend much time in her room anymore. She's not even being weighed daily. It nearly seems absurd that we are sitting in a hospital - she's so normal. Why are we pumping poison into her veins, again?
The doctors have decided we're going to Boston next week to prepare for transplant. We are only a month away from the big admission down there and they need to see both of the girls for testing. On Tuesday, Riker will be going down by ambulance and Jon, Valentine, and I will follow in our car. Hopefully, we'll get to see more of the facilities this time and get a better idea of what the next few months hold for us.

Wednesday, August 3, 2011

August 3, 2011

61 days since diagnosis
day #3 of current hospital stay
Riker's chemo is well underway. She began day 2 today and seems to be tolerating it ok. Yesterday she was quite grumpy after being sedated for her final lumbar puncture. It does not help that she is also teething. Poor thing. It's hard to believe we've only been doing this for 2 months. I'm starting to feel like and old pro.
Today we wrapped up getting video together for Extreme Makeover Home Edition. Our friends will finish up the editing and application process. Now all we can do is wait and hope. This really would be such an amazing answer to our current problems. However, I don't care what it takes. I will not bring Riker home to this house. If we can build, so be it. If I have to stay in Boston and away from my family for Christmas, so be that.
No matter what the result, I hope it makes itself apparent soon. Jon and I are riding on our last nerve. The stress from everything is causing us to bicker and hurt each other when we don't mean to. Reliving every moment of this ordeal for a video camera hasn't been too much fun, either. I just want to get off this train.

Monday, August 1, 2011

August 1, 2011

59 days since diagnosis
day #1 of current hospital stay

We're back. I moved Riker and all our stuff back into the Barbara Bush Children's hospital today. She will start her 3rd round of chemo (consolidation) tomorrow at 7:30am. This is supposed to be the last round before conditioning and transplant in Boston.
Our 2 days home were great. We felt like a real family again. Both my girls under the same roof.
Riker didn't sleep great and I was up feeding her every 2 hours but it sure was worth it. For now, though, we're back to our routine in the hospital. Hopefully we'll get another reprieve at the end of this month.
On another note, our friends have been helping us make videos to submit for the Extreme Makeover application. It's coming together nicely. I even got a video of Riker's oncologist. If we did get picked, it would be such a fantastic opportunity to educate the public about leukemia, the donor registry, and on infants and cancer. Perhaps we could do our part in some small way to contribute towards finding a cure and saving lives.
Hopefully we'll have something together by the end of next weekend! In order for this to happen we will need an answer soon!