Saturday, July 30, 2011

July 30, 2011 - Day #57

Riker has finally been allowed to come home! It is only for the weekend but it feels incredible to have my family together for the first time in nearly 2 months! Valentine's reaction at seeing Riker was amazing. "Riker! You're here! You're really here! I missed you!" Oh... I'm kicking myself for not having my camera ready.
Coming home is such a blessing but it does not come without its own stresses. Leaving the hospital after a 2 month stay is much like moving out of a dorm. I had several car loads that I took home in preperation of the leave. On top of that, I got my first delivery of home care supplies. I got a bio hazard bin for needles and the like. And I got a giant bag of dressings and syrnges so that I could flush her central line and change the dressing. We'll only be home until Monday so I'll only need to flush her line once or twice. It is still incredibly intimidating.
Riker's central line, which leads almost directly to her heart, needs to be diligently taken care of. This is the single most likely source of infection for her and infection is the single most likely cause of death for a child in her situation. At the hospital, Riker is getting her vitals checked every 8 hours. At the hospital, she'd be treated immediately for any sign of infection. Take all the anxiety of bringing home your first newborn and multiply that by some ridiculously large number and you can just about imagine how anxious I am.
Riker is teething. Like any baby who is teething, she drools and her nose runs when she cries. Oh... and she does cry. Ugh... I know nothing is wrong with her but I am still scared. Also, it was almost 100 degrees out today. Did she feel like she had a fever? Not really but she was hot. Oh... yea... so was I. All the confidence I have had from taking care of Valentine for almost 3 years has completely gone out the window. I have a sick baby.
Tomorrow afternoon, a home care nurse will come to draw blood from Riker. On Monday, we'll find out if her counts are high enough for her to start her next round of chemo on Tuesday. On one hand, we really want her counts to be high - that means she's recovering well. On the other hand, if her counts aren't quite high enough, we might get to keep her until Wednesday. Monday is only day 28. Most people do not recover until day 30-35 for their second round of induction. Riker, of course, is not most people.
For now, we're going to enjoy having Riker home. We are going to all enjoy having our family together for such a beautiful summer weekend. To quote my oldest daughter, "Mom, it's perfect!"

Thursday, July 28, 2011

July 28, 2011 - Day #55

Extreme Makeover Home Edition called today. Wow... I cannot even imagine anyone being interested in our story. I know we have unique circumstances that warrant a new house but are we really that special? I'll do anything to make sure that Riker is safe, though. A new house is a must to keep my little girl safe. In order to apply to be on the show, we'll need to make a video and answer a bazillion questions. When will I find the time?
There are a million things to do in order to get into a new house. What can we afford? What can't we afford? How will we make this happen? I am thrilled that we may get the help we need but I am also even more stressed out than before. How will I pull this together? Do I even want to be on TV? I don't want to sound ungrateful but I just cannot take on another task.
Today has been very stressful for me. Riker was still not allowed to come home. Her counts have not recovered. I didn't think I'd be this disappointed but I am. I was really hoping to bring her home. When I came home, Valentine was so excited. "Mommy! We're going to see Riker! yeah!!" :( "No, not yet, Valentine." "But she's a little bit better, right? She can come home?" "No, not yet, Valentine." Talk about breaking my heart.
I need to get a hold of myself. I feel like I'm breaking apart, a little more each day. My patience is at an all time low and I find myself snapping at my family. I am constantly apologizing to Jon and Valentine. I need a break but I'm not sure how to take one. There is no break from this. This is my life and you don't get a break from life.

Wednesday, July 27, 2011

July 27, 2011 - Day #54

Riker did not come home today as hoped. Her white blood cells have not recovered enough for it to be safe for her to leave the hospital. I wasn't even expecting to bring her home yet. It's only day #23 of induction. Alas, I find myself disapointed anyway. Hopefully she'll come home tomorrow.
On another note, I finally got myself to my doctor yesterday to look at my back. All the stress, travel, and sleeping on the awful hospital couch has really done a number on me. I have a bad back and have already had one surgery. In the past week, I have almost collapsed with Riker in my arms and have had to have the nurses take her from me more than once. I do not need problems like this right now. I ended up getting an x-ray and will have to have an MRI. I will also be going to physical therapy. I have a lot of time for this.
As a last resort, I finally agreed to take a muscle relaxer to see if it would help. Unfortunately, these are not compatible with breastfeeding. This means a lot of pumping and dumping. Anyone who's even pumped a few times at work each day knows how heartbreaking this is. Clearly, whoever said "don't cry over spilled milk" was taking about breast milk. Unfortunately, they didn't help a lot. The side effects are not pleasant and I find myself still groggy and tired over 24 hours later.
Again, here I am feeling sorry for myself when I should be grateful that so many things are going right. It seems, however, that for every bit of good news, there comes a dozen results that are more stressful than the last step. I am finding myself overwhelmed with stress lately and even losing sleep. I have to find a way to de-stress. Even "taking time for myself" is stressful these days, though. Hopefully tomorrow will bring brighter things. A few days out of the hospital living a normal life should refresh everyone. I do find that the times I feel the best these days are when my girls are together and when Riker gets to be away from this wing.

Monday, July 25, 2011

July 25, 2011 - Day #52

No tubes! Finally, Riker is taking a bottle from the nurses. The NG tube is out and the hospital staff has agreed to treat her like a normal baby - they will allow her to control her intake and take her weight and nutrition stats as proof of how she is doing. Right now, she's like a normal baby :)
Her blood counts are coming up and Riker is feeling good. The doctor's have decided to put her blood tests back to every other day. When she is tested again on Wednesday, her counts are expected to be up enough for her to go home! Even if they are not, this makes it nearly certain she will go home over the weekend :)
She will start her next round of chemo (consolodation) on Tuesday. This will begin with another LP (lumbar puncture) and chemo put directly into her spinal fluid. This should be her last round of chemo in Portland. After that, we're off to Boston.

Sunday, July 24, 2011

July 24, 2011 - Day #51

Gritty's in Lewiston threw us an amazing benefit last night. It was the most fun I've had since I can remember. For one moment, I wasn't weighed down by everything going on in my life. For just a second, I let myself have a good time without feeling guilty.
It was overwhelming and amazing to see so many people banding together on our (Riker's) behalf. I saw people last night that I haven't seen in years - not to mention all the wonderful strangers that came out to support us. It was incredible.
During the day, Jon and I began the process of looking into houses. This is very difficult because we need one yesterday. When Riker and I come home, we'll need to have a place all ready to move into and it will need to be settled for at least 2 weeks. Obviously this would be stressful under the best of circumstances but is just over the top for us now.
In 100 degree heat, Jon and I looked at modular homes for hours. I think (hope) we can make this happen. We HAVE to make this happen. We found a company that puts complete air filtration systems in our house. If we're going to do this - we need to do it right. This will filter out the moisture and germs in the air. This will help ensure that Riker is in the cleanest environment possible.
Next step is to secure financing - then we can start looking for land and plan our house.
Living in isolation over the 6 months that it takes Riker to recover is daunting to me. However, I am starting to find some comfort in us being in a new home for our new start. I am starting to think about my girls growing up in a new house and playing in a new yard. I am thinking about our cozy Thanksgiving & Christmas - just the 4 of us. It seems too good to be true - Riker might just make it through this. I might get to see Valentine and Riker become the best of friends despite fighting every day :) A new house is begining to represent all of this for me.
30 days ago, I didn't dare dream past today. I honestly didn't think we'd make it through. We're not even 2 months into this ordeal - maybe 1/5th of the way through - but I don't think there is a person left who doesn't think Riker can do this. It feels good to dream about a future again - a future with my whole family together. <3

Friday, July 22, 2011

July 21, 2011 - Day #48

What a long day. We drove down to Boston for our transplant consult today. Where to begin? There was so much information that it was overwhelming.
First of all, we will be using Valentine as a donor and she will be sedated for bone marrow aspiration. It's a relatively painless and easy procedure but it's still scarey. When Riker is given the bone marrow, it is given just like a transfusion. It finds it's way to her bones and takes root. Riker's blood type will change from O+ to Valentine's type of A+. If Valentine was male, Riker's blood would now indicate that she, too, is male. It is amazing.
The risks and restrictions for Riker and the rest of our family after transplant are daunting. We will have 6 months of nearly complete isolation. We are not allowed to have anyone besides our immediate family (those of us that live there) in our house. Riker cannot be in any enclosed spaces besides our house, our car, and the hospital. The car and the house must be kept as sterile as possible at all times. Valentine will need to be pulled out of school and only exposed to people that are healthy.
We will not be able to stay in our current house during any of this, either. It is just too dangerous. We have begun the very stressful process of trying to find something newer. It appears we will need to put a modular on a small plot of land. Because of the market, we're finding that this is actually less expensive than buying something that already exists. We will need to have the house ready and everything moved in 2-3 weeks before I can bring Riker home from Boston.
The worst of the restrictions is no breastfeeding. I am devastated about this one. I can still pump milk for her but it will need to be irradiated so that the lymphocytes will be killed. These are mature T cells that fight infection and there is a risk that they could attack Riker's new bone marrow as it tries to grow. I will lose that special time with her - my own special way of giving us both comfort through these horrible times. I breastfed Valentine for 15 months and anyone who knows me knows how important breastfeeding is to me. And not least of all, pumping sucks. I will, though, pump until Riker is over this hurdle. I will do everything in my power to make sure she gets breast milk until she is 9 months old and then even try for the 1 year mark. That is a lot of pumping :(
My plan is to "wean" her after her next round of chemo when she starts to feel better. I don't want to take it away from her when she's feeling lousy but I want to breastfeed as long as I can. I will not wait until the last minute because I don't want her to wean while she's going through the horrors of transplant. When she starts to feel better after transplant we will begin working on sippy cups and solid foods. She'll be around 8 months then. Crazy.
Our timeline as of now looks like this:
- possibility of going home for a few days at the end of July
- beginning of August we start a consolidation round of chemo
- end of August when she recovers, we will go down to Boston for another consult and testing on both the girls.
- more testing until the middle of September when Riker will go down for 10 days of conditioning chemo
- after 10 days, around the end of September, the transplant will occur. Valentine will spend one night down in Boston for this procedure.
- Riker and I will remain in the hospital for 4-5 weeks and should be leaving the beginning of November. It is still not clear if we will be staying in Boston at the Ronald McDonald house or if we'll be returning home at this point. We will not be coming home until we have a safe place to live.
- Once home, we will live in virtual isolation until mid-March or so.
After this process is over, we will need regular labs drawn. If Riker does not relapse, she will not need further treatments. The transplant should be the end of her leukemia and she will be considered "cured."
Missing Thanksgiving and Christmas, being completely isolated from our family and loved ones, will be worth it. It will all be worth it if my little Roo can just be ok. <3

Tuesday, July 19, 2011

July 19, 2011 - Day #46

On Thursday we go to Boston for consult. Then we will get our questions answered - I hope. The thought of going to transplant has me completely on edge. The idea of transplanting bone marrow, of replacing someone's blood is completely unnatural. Unnatural and wonderful. Unnatural and very very scarey.
A successful transplant does not mean we're safe - it does not mean that we will go home and live happily every after. The road is so long - how long? I don't know. And there is so much risk. So many things that could kill Riker that have nothing to do with the transplant at all. She will be on drugs that will suppress her immune system for a long time. I don't know how long. I do know that the smallest exposure could be fatal to her during this time.
We have decided that we need to move. Our house is not safe and our daughter's life is too precious to risk it. I'm not sure how we'll make this happen but we will make this happen. The only questions are how quickly this will need to be done. We'll know better after our consult. For now, I wait.

Sunday, July 17, 2011

July 17, 2011 - Day #44

I start back up at work tomorrow. I've been away for 6 weeks. It feels like a lifetime - everything is different now. More so than the first time I went on maternity leave. My entire life is upside down. I cannot afford to lose my job, though. In more ways than one. We need the income is the obvious. But also, my job is flexible and understanding. Who knows how long this will last and what other job would tolerate me taking last minute time off to travel to the hospital all the time?
My employers are allowing me to work remotely pretty much exclusively. This way, I can work from the hospital and more importantly, from Boston when we go for transplant. I am an analyst so I can pretty much do my work anywhere. I feel confident that I will be able to succeed with this plan.
I am, however, scared. I'm constantly exhausted. The stress is physically taxing and I always feel like I'm under rested no matter how much sleep I get. My hope is that having an outlet such as my work will actually help me feel more rested. I am afraid that I am wrong, though. Adding another thing to my plate is risky. For now, we're going to play it by ear. I can always leave again if I can't cope.
Thankfully, my managment and coworkers couldn't be more supportive. I know they're looking out for me and willing to help me along in anyway that they can. All I can do is take this one day at a time and see where it goes from here.

Saturday, July 16, 2011

July 16, 2011 - Day #43

Riker is 5 months old today. Another "birthday" for her in the hospital. Another milestone met. 5 weeks ago, I wouldn't have thought it possible. Happy birthday, Riker.
Today has been another tough day for me, emotionally. Yesterday, when I spoke with Riker's oncologist, we talked about what transplant and the coming months would look like for our family. It's going to be a very long, very difficult road. Riker will have virtually no immune system for months. What's more, we have to keep her immune system suppressed so that it doesn't try to fight off the transplanted cells.
One of the concerns of the doctors is our current house. An old home has mold spores which are blown throughout the entire house when you have forced hot air. Our basement is wet... our windows have condensation... we have mold. The amount we have would not be a problem for a healthy person. But for Riker, it could be fatal. The oncologist did not indicate that we should move, however, when asked, his words were, "You will never regret any decision you make to help your daughter live. If your daughter does not live, you'll question everything that you didn't do."
How can we not try? Buying a house is stressful under the best of situations. I just don't know how much more I can take. I'm wearing out emotionally, physically...
This will take more research... We're not even sure that it's a valid option. For now, I need to rest on it.

Friday, July 15, 2011

July 15, 2011 - Day #42

Our HLA typing came back today. Valentine is a 11 out of 12 match. This means that, if we need to, Valentine can be a donor for Riker. This is not without risks, however. Our next step is to go out to the registry and see if there is a 100% match out there for Riker. There will be choices to be made, either way. We'll just need to wait until our consult with Boston at the end of the month.
It amazes me. Even though Riker, Jon and I are O+ (blood type), Valentine is A+. If she were do donate her stem cells to Riker, Riker would also have A+ blood. This caused me to think about other genetics. She'd still have the genetic coding for O+ blood. The genetics she'd be passing on to her children... Can she still have children... Maybe not. Wow... I suppose I shouldn't think that far ahead.
This is all so scarey... take everything day by day. Don't think to far ahead. Then there's suddenly hope. The oncologist spoke of gymnastics and dance some day. Dare I hope? He mentioned that she'd eventually have her lines out and she could go swimming. 3 weeks ago, I didn't think she'd every have a bath again. What a rollercoaster we've been put on.

July 14, 2011 - Day #41

I spent today with my girls and it was beautiful! Their love for each other is so amazing and I wish I could just see them together more often. It is so difficult to try and split my attention here at the hospital. Thankfully, Riker was unhooked and allowed outside again today. Wonderful! It almost felt normal.
When we left the hospital it was not as pleasant. Valentine clung to Riker and cried - "Riker Riker... I NEED you." My heart is still breaking. I was carrying a half a dozen bags and Valentine sobbed to be picked up the entire walk out to the car. She needs so much more than I am giving her right now. I hate that she needs to "toughen up." A 2 year old just needs to get over it? It seems cruel. To both of us...

Wednesday, July 13, 2011

July 13, 2011 - Day #40

Today was amazing. As a complete suprise to me, Riker was allowed to have her central line capped and was able to leave the hospital for several hours :) I was able to take her out in a stroller and have a "normal" day - just her and I. We took a long walk in the very old scenic part of Portland that surrounds the hospital. Then we stopped a lovely cafe and had lunch! We ended the day laying on a blanket enjoying the breeze in the shade. That is until it started to rain!
When we got back to her room, we played on the floor and used to her bumbo so that she could sit up for a bit. The nurses and I decided to put her in an exersaucer, too! She's not quite ready but we packed her in with blankets and she did very well. Our days in the hospital are feeling more and more like days at home would. This place is slowly becoming our home.
Obvioulsy, she continues to do well. She has been completely taken off her TPN and is getting all of her nutrition through breast milk. I've done enough pre and post weights so they are allowing me to feed her "ad lib" while I'm here. When I'm not here, she's been getting 80 ccs (Almost 3 oz) per hour while she's awake and at night she's getting 10 ccs per hour countious (1 oz every 3 hours) She's been tolerating this so we'll be slowly increasing her to 100 ccs (just over 3 oz) every 3 hours during the day and 20 ccs (almost an oz) continuous at night. We are finally over the food slump! Back to her normal self, Riker nursed every half an hour from 7-10pm :) It's nice to have my baby back.
There are only 2 more days left that she'll be getting chemo for this cycle and she's handling it amazingly. After that, we just need to wait to see how quickly her white blood cells take to recover. When they do recover, we start all over again.
For now, we take each day, one at a time. I'm getting better at appreciating today and not worrying so much about tomorrow. Tomorrow, Valentine will come to the hospital to visit. It is these moments that I really cherish - when I can be with both my girls at the same time.

Sunday, July 10, 2011

July 10, 2011 - Day #37

She is so normal. Riker has spent a huge part of her life hooked up to tubes. She has spent most of her time in a crib. I cannot believe how normal she is. She is growing like any other 4 month old and she's hitting her milestones. Everything is stacked against her and yet she continues to thrive. She is almost finished her 2nd round of chemo and she is still strong. I am completely in awe of her.
Today I took a big step in making this hospital home. We're not visiting... we've moved in. Even if it is temporary, we've already been here a month and I don't think we've hit the halfway mark. We need to make this home. I brought in Riker's playmat from home and played some of *my* music instead of just the endless tunes cranking out on her swing. It was wonderful. She tires easily... she's on a lot of chemo and anti-nausea meds... but it was great! Honestly, it was one of my better days in the hospital with her.
Two days ago I spent some time on the floor with Riker. We did a little tummy time and she tolerated it but didn't do too well. Today, she rocked the tummy time! Look at that picture! She's developing so quickly :) I laid her down in her boppy pillow today and she sat up! I guess I just assumed we'd miss out on all these little things. Even if Riker survived, I thought her life would be completely on hold while she laid in her crib being pumped full of meds. No matter what happens, she's having a great life. She's doing all the things a child her age should be doing and she's loving it.
She's got all the nurses and doctors completely charmed and is very well cared for when I'm away. Every time I show up at the hospital, someone is holding her or playing with her. It's not a normal life but it's a good life. Riker is happy. Today was another good day. I never imagined what a roller coaster this journey would be!

Saturday, July 9, 2011

July 9, 2011 - Day #36

If all goes well, we'll be talking about going to the children's hospital in Boston for transplant soon. I expect we'll be headed that way by Fall. I am scared to death.
Spending only 1/2 time with each of my daughters is taking its tole on me. I'm exhausted and I miss both of them so much. No one takes care of them like I would. They're fine but *I* want to dress and bathe them. *I* want to kiss away all of their tears. My heart is breaking.
When we go to Boston, I will have to spend most of my time down there with Riker. I will no longer be able to drive home every other day to spend time with Valentine. I will have to rely on others to bring her down for visits. Every part of me is screaming in protest to this. What kind of mother only gets to have short visits with her 2 year old? How will this impact my sweet girl? She's already so different.
I know that when people tell me we'll get through this they mean well. They say that children are resilient and that we will all be stronger for this. They tell me that Valentine won't remember this. I know they mean well but it doesn't help! No mother should ever have to chose between her children. No mother should ever have to be part time with any of her offspring.
These people don't know and understand my very exceptional 2 year old girl. She remembers EVERYTHING. She has memories from when she wasn't even 1... before she could even talk. I know she will probably not remember this in great detail when she's 30 but people are crazy if they don't think it will shape the person she'll become. And maybe she'll be a better person for it. Maybe we'll all be better people for it. But what parent doesn't want to shield their children from all the pain in the world? I don't want her to be a "better person." I want both my girls to feel safe and grow up normal.
My husband and I planned our family. Our children were supposed to be raised in a stable family with their Mommy and Daddy both there always loving them and taking care of them. I feel robbed. I have been robbed of my time with my children and robbed of my time with my husband. There is not enough of me to go around.
I know I should be basking in the good news we received only a day ago. It's hard, though. This is all too real and our lives have been changed forever.

Friday, July 8, 2011

July 8, 2011 - Day #35

We got the best news ever today. The test results came back from Seattle today and even under their very precise testing, they couldn't detect the cancer. The official terminology is that her MRD (minimal residual disease) came back negative. This means Riker is in full blown real remission!
I don't think this changes our course of treatment in any way but it dramatically increases her chances of survival. It's definately made me feel more hopeful :) We need to continue to be agressive because if she relapses, her chances of survival are reduced to only 1-2%. We need to fully cure her.
Today we talked nutrition again. The doctors want her to get more breastmilk and get her off the TPN. (me too - haven't I been saying this all along?) It's odd, it's always someone new talking to me and they always seem to think I'm going to fight them. I just want to be informed and involved. I'm not here to make their lives more difficult. We all want what's best for Riker and that's what is important.
I am, again, doing pre and post weights for feedings so that we can approximate how much Riker is taking in from me. She consistantly takes in about 2 oz which is pretty good considering how little she's been eating when I'm away. The doctors want her to eat about 4 oz every three hours which would be consistant for her age since she sleeps through the night. The plan at this point is to increase her feedings by 1/3 of an oz every two feedings as tolerated. If she doesn't take enough from me, they're going to "cap her off" to the current feeding requirement. Let's hope she gets off this TPN soon :)
She also getting Zofran every 6 hours to help with the naseau caused by the chemo. If she doesn't get it in time, she ends up throwing up her entire feed. We finally identified that one of her antibiotics was the major reason she was unable to keep down her food well after the last round of chemo. With this now under control, I think we should be able to get her eating normally again.
It's amazing how normal it feels to be with Riker. When I look at her, I think, "How can this baby possibly be sick?" Today we spent some time on the floor together. We had tummy time and we played with her toys. Dispite the fact that she was 3 weeks early and spent a week and a half in a drug induced coma, she seems pretty on target for a 4 month old. I am blown away by her strength and resilence.

Wednesday, July 6, 2011

July 6, 2011 - Day #33

The good news we've been waiting for: Riker has achieved morphologic remission! This is only the first victory in a very long road for dear Riker. Best case scenario, we'll have at least another 5 months of hospital stays and over half of that will be spent in Boston.
The remission she has achieved today basically means that they cannot detect any cancerous cells under a basic microscope. Samples have been sent off to Seattle where they will do far more precise testing to determine just how good this remission is.
Riker's second round of chemo is fully underway and so far she is tolerating it well. We still have another 5 full days to get through. If she can stay healthy through this round, we are getting her food issues under better control every day. Without any setbacks caused by the chemo, we should be able to get her off the TPN within the next month. She is taking the bottle occasionally and tolerating her NG tube feedings better than before.
Today, Jon, Valentine, and I went down to the clinic in Scarborough for some HLA type testing. When these tests come back in a couple of weeks, we'll know what kind of match Riker's family is. If we are not an acceptable match, we'll be looking at the registry for a stranger. This will be Riker's best chance at long term survival. Let's hope we are able to find one for her quickly.
The expectation at this point is that Riker will have one more round of chemo after she recovers from the current round. Then, if a suitable match has been found, we will be going down to Boston for a transplant. We'll then spend at least 3 months down there for the transplant.
For now, our little family is just enjoying today. It feels really good to finally have some good news :)

Tuesday, July 5, 2011

July 5, 2011 - Day #32

Riker has spent nearly 1/4th of her entire life in the hospital. Today marked day #1 of her second round of chemo. She was sedated in order to get a sample of her bone marrow and spinal fluid. She was also given her first dose of chemo directly into her spine so that it could be carried to her brain. The samples will be sent to Seattle and will tell us how well the cancer is reacting to the chemo.
I woke up very sick this morning. I ended up at the doctor's for cough medicine and an inhaler. I was supposed to be at the hospital for at least part of today but had to stay away because of being sick.
Also, we got a letter from my husband's workplace today. There was a confirmed case of tuberculosis and there was possible exposure. Since I have tested positive in the past, I now need a chest xray before I go see Riker again. Are you kidding me? ugh!
Let's hope for some good news soon. It seems to keep raining down on us.

Monday, July 4, 2011

July 4, 2011 - Day #31

Amazing weekend and amazing day today! Riker's white blood cell count (WBC) has been good so we were allowed to leave the hospital as I hoped :)
On Saturday, we were able to leave the pediatric wing and go down to the courtyard for family photos. We were only away for just over an hour but it was so good for our overall morale. A close family friend was able to come to the hospital and we should have some wonderful photos to mark this part of our lives together. I feel so relieved and blessed that we now have family photos! It always seems like you'll have plenty of time. I don't know how I'd ever live with myself if I lost Riker and didn't have a single family photo to look back on.
Then today, we celebrated the 4th of July as a family with our closest friends IN THE PARK! Such a simple thing, holding my baby while the breeze blew through the trees. Such an amazing thing that no mother should ever take for granted! The day was wonderful - we had barbeque and salads and did normal things that normal families do on a beautiful summer day. I could not have even imagined it better than it happened :)
Tomorrow we are back to reality. Tomorrow marks day 28 of Riker's first round of chemo. If she is doing well, tomorrow marks day 1 of her second round of chemo. She will be sedated in the morning for her lumbar puncture and bone marrow sample and then chemo will start later that evening.
I woke up yesterday with a bit of a cough. I hoped it would clear up quickly and was caused by the dry air in the hospital. Today, it got a lot worse and as the day wore on I became tired and achy. In order to take care of myself, I came home from the hospital tonight and will not likely be at Riker's procedures tomorrow. I feel so guilty! I know that I am doing the best for her by staying away and taking care of myself. However, I also feel like I should be there. My life is a series of these decisions and I feel guilty no matter what path I choose.
Let's hope that my symptoms let up tomorrow and let's hope that Riker's procedures go well. Let's hope that she is able to tolerate the chemo again and that when we get her test results back, that she is in remission.

Friday, July 1, 2011

July 1, 2011 - Day #27

I bought a new bottle - the Adiri Natural Nurser, which is shaped more like a breast. The nurse was able to give her 10 ccs today! It's not much but it is a start. I would feel so much better if she would eat when I'm not there. I feel so incredibly guilty being away - it would make it just a little easier if she would just eat.
Riker continues to do well and we are still on target for our weekend adventures. When you're in the hospital, everything is day by day. I'm keeping my fingers crossed - I am so looking forward to this.
Next week, our entire family has to go to the hospital for genetic testing. We'll have blood drawn and they will begin the process of seeing what sort of match we are for donating marrow. This will include Valentine who is her best chance at a match. They indicated earlier that she may be too young to donate, however. I guess the process will take some time to figure out if we are capable of donating. Unfortunately, I don't have a lot of information about this but I will be prepared with lots of questions when we meet with the nurse next week.

June 30, 2011 - Day #26

Riker is thriving. She's up over a pound and a half since she was admitted to the hospital. Just over 4 months old and she's 12lbs 10oz. I'm so proud. She's starting to keep down her feedings, too. It turns out one of her antibiotics was causing the spit ups. We couldn't be happier.
Day #28 of her first round of chemo is next Tuesday. That means she's going to start her second round of chemo that day. She's done so well over the last month, I'm so scared that this second month will not be as easy on us. It's coming up so fast, too.
That same day, she'll be sedated and further tests will be done. This time, she shouldn't have to be intubated. Let's all hope she keeps breathing fine on her own. They will be doing a spinal tap again, so they can test her fluid and make sure there are no cancerous cells in her spine and brain. At this time, they will be putting chemo directly into her spinal fluid so that it can get to her brain. Chemo does not pass through the blood/brain barrier very well. They also will be looking to get a bone marrow sample. Last time, they were unable to get a sample; this time it will be crucial that they are able to.
I'm not sure how long it will take, but the samples will be sent to Seattle for testing. We are really hoping to hear that she is in remission. This does not mean that the cancer is cured but it does mean that the chemo is working. If she's not in remission, it doesn't mean she won't be in remission after this second round. Either way, this is the news we are hoping for - this means she has a chance of survival. No matter what, she'll have at least 6 rounds of chemo total - she will spend most of her time in the hospital until at least November. I dare not even hope she'll be home for her first Christmas.
On a more positive note, since her white blood cell counts should be up, we're hoping on having some small family adventures this weekend before the chemo. We will not be going home - it would just be too dangerous to be that far away. I actually don't even know if we'll be going home when she recovers from the second round of chemo. I don't think the subsequent rounds will be quite as agressive as the first two but we'll have to wait and see. We'll know more around the end of July/beginning of August.
On Saturday, I'm really hoping we can finally get some family photos. I am so devastated that we didn't have these done before Riker's diagnosis. The guilt is absurd but the guilt is there, nonetheless. I need photos of my babies before anything else can go wrong. I can't quite explain how desperate that feeling is.
On Monday, we may get to leave the hospital for a few hours for the 4th of July! We're planning on a picnic/barbeque at Deering Oaks park. I'm going to wear her in my front carrier and keep her safe and close. I cannot wait to have a normal moment with my family.