Sunday, October 30, 2011

October 30, 2011 - Day 29



4 months, 3 weeks, 4 days since diagnosis
day #38 of current hospital stay

I decided to go home. I haven't been home in over a month. I have only seen my husband twice since I left and I have only seen my daughter 5 times in that same period. I simply cannot miss Valentine's third birthday. I've already missed so much. I think it's tragic that she's gotten used to having me down in Boston. Good under the circumstances but still terribly sad for me.

The got a ticket for the 6:45 train out of Boston. I was going to travel in the morning and keep my trip shorter but there were no trains available. The train coming in from Portland was delayed by 4 hours, delaying my train by over 2. Of course, I got to North Station an hour early so I sat their for 3 hours. My phone was dead in the first 1/2 hour. I can't believe how easy it was to sit there for 2 1/2 hours and do nothing in a cold train station on a hard bench. Sitting around in hospitals have made waiting around for a train very easy :) It's a lot easier than waiting for test results while you listen to your baby moan and gasp for air.

I did not decide to come home lightly. I really struggled with the decision. Riker needs me. But Valentine does too. I didn't want to miss Riker's first Halloween. And there's always that voice in the back of my head, what if it's her ONLY Halloween?. But I didn't want to miss Valentine's birthday. I've already missed so much. Then there's the house that Jon's already put a bid on. It's a short sale, so, even though the sellers have accepted the bid, the bank still needs to. However, it could happen. I'd like to see the house before we move in. And if things move quickly, I need to sign power of attorney paperwork so that the documents can go through while I'm away.

So, here I am, riding in a train, headed to Portland. It'll be closer to midnight by the time I arrive but that's ok. I'll get to sleep in my bed. I'll get to feel the warmth of my husband. I'd be woken up by the pitter patter of my toddler's feet. What a birthday present finding me there will be for her.

The Child Life staff at the hospital was really great about helping me out with my Halloween dilemma. They had costumes and other Halloween items (blankets, pillowcases, onsies, booties, bibs). I had a little Halloween before Halloween :) Those pictures mean a lot to me. I kinda got to have my cake and eat it, too.

Riker's "cold" seems to be getting better. She's still sleeping a lot, though. Healing up, I hope. We've moved from a constant pump running morphine to a dose of .6 every 6 hours. In a day or two, we'll move to .8 every 8 hours before eventually weaning her. Those doses can be converted over to oral as soon as we're ready to go home. Just one more piece in the puzzle.

They've also

The eating still isn't working out, though. Getting answers from the doctors is like pulling teeth. It's never been more apparent to me how different I am from other people, specifically, the other parents they are used to dealing with in BMT. JUST TELL ME, PEOPLE! I CAN TAKE IT! So, I asked a dozen different ways. How long will we wait for her to eat? what's the next step if she doesn't eat? what are we doing to do next - is this normal? will she continue to stay on TPN or will we take other measures? Will she just stay in the hospital forever if she doesn't eat? Will we try an NG tube here in the hospital - I'm not taking her home on one. Will you eventually put in a G tube? Finally - yes. OK FOLKS Why are we playing 20 questions, again?

So, they finally "confessed" that they were waiting to see how she did over the weekend and then they would revisit the issue on Monday. (They promised to wait until Tuesday since I won't be there.) Ok... if they already knew that, why didn't they share. Because other parents don't want to know! I just cannot imagine. Other parents sometimes think they want to know but cannot handle the answers and worry excessively when given time to think. Other parents don't ask these questions that I ask. Other parents haven't already thought about G tubes. I feel like either one step ahead of the medical staff or walking side by side with them for the most part.

So, I think we may try the NG tube again in the hospital. If we can get a couple of feeds in her, maybe we can get her hungry again? I will not bring her home on an NG tube and the doctors agree. She's a Houdini when it comes to that tube. She's strong and fights it... then has it pulled out in under an hour no matter how well it's taped down. I've watched 3 nurses hold her down while they put on in and tried to tape it down. I cannot do that on my own at home.

If that doesn't do the trick, the next step is a G tube. I think that's where the medical staff is leaning, too. It takes the pressure off of her and I to get her eating. We can enjoy food time without all the urgency. She'll eat eventually. Eventually, she'll be a normal, cancer free child. Plus, it is crucial that we get her to take all her meds and there will be a lot when she goes home. She's a pretty good med taker but that's part of the problem, I'm sure. Who wants someone going at their mouth 20 times a day with unwanted syringes full of fowl tasting liquids?

So, now I can do what I do. I can process this information and make peace with it when the time comes.

There was another big decision made today. One I made for me. I am no longer pumping. Let me confess, the guilt of this decision is overwhelming. I am still pumping plenty - I didn't dry up. But I'm tired. I'm so tired. I think I have enough to get her to the crucial day 100. I have to be supermom all the time and this is one thing I don't have to do. I feel like I'll disappoint my "lactation" friends and support. I feel like selfish, especially when so many mothers struggle so badly with just making enough for their healthy child.

I pumped more than 1/2 time since my baby was 3 months old when she was diagnosed. I pumped through the most stressful days of my life and I really did struggle with supple for a few weeks. And I've pumped exclusively for 2 1/2 months - since my baby was 6 months old. I have to hold on to that. I think I have something to be proud of.

I think I'm going to cut my milk with formula, too. My instincts have been good up until now. I am not confident that giving Riker only frozen milk and irradiating it keeps all of the nutrient properties of breast milk intact. There's no research showing this, however, I have learned so much about what we don't know about breast milk. Because of this, I actually think it might be good for her to get some formula. Now may be the best time to start this, too. Her taste buds have been completely wiped out and nothing tastes the same to her.

So here I babble... I rationalize because I feel so bad. I feel the need to apologize to every mother who struggled and couldn't keep their supply up because I still have my supply. I feel the need to apologize to Gloria and Vicki and all the wonderful girls in my support group who've been there for me through the worst of this. I feel like I need to apologize to Riker who never gets what I was able to give Valentine who was exclusively breastfed for 15 months. This is truly one of the hardest decisions I've ever made.

Those of you who know me well, know that is when I babble the worst... when I just want someone to tell me over and over again that it's ok... that they understand and they'd do it, too, if they were in my shoes. So... I'll stop... or risk going on forever in this circle talk.

October 29, 2011 - Day 28

4 months, 3 weeks, 3 days since diagnosis
day #37 of current hospital stay

Riker has bronchiolitis. A nasty chest cold for a normal baby. A probable ICU stay for an immunospressed baby. Hopefully it won't come to that. But, this explains why the mucus and coughing is not clearing up. She was given an infusion of IVIG today which gives a boost to the immune system and should hopefully clear up the viral infection.

Riker continues not to eat and hopefully the only reason is this nasty bug. No one wants to eat when they are sick. She's still sleeping most of the time and hopefully she's healing up and will go right back to eating again after she kicks this. I am trying not to let it frustrate me.

So... again I wait. I'm tired. I'm homesick. She destats a lot overnight when her O2 drops and it keeps me awake. I am sleeping a very odd schedule where I finally take a nap out of sheer exhaustion around 5pm and wake up around 9pm. Then I'm up for most of the night, trying to squeak in a few hours of sleep in the wee hours of the morning.

I keep telling myself this is temporary and will pass. When it's over, it will seem like it wasn't so long; wasn't so bad. I'm hanging in here. It could be a lot worse - I haven't really hit that proverbial breaking point. Go figure. The quote really is true. "You never know how strong you are until being strong is the only option you have." I think that about sums it up.

Friday, October 28, 2011

October 27-28, 2011 - Day 26 & 27


4 months, 3 weeks, 2 days since diagnosis
day #36 of current hospital stay

Not much is changing from day to day. Riker is seeming more herself each day that passes. We are still trying to get her to eat. I have gotten her to take a very small amount of milk from a cup but no luck with the bottle. I'm not sure we'll ever go back. Either way, I hope she goes back to drinking her milk soon. I hope that trying other foods helps to bring her interest back.

The good news is that Riker doesn't hate solid food. I am not sure she's actually eating any of it and she doesn't open her mouth for it but, as I recall, this is normal behavior for a baby learning to eat solids. I am just trying to be patient and have faith that she will learn to eat - one bite at a time. I am not above letting her try ice cream and cookies if it comes to that :)

Riker's cough is still pretty bad. They ordered another chest x-ray today and it showed that she had bronchial irritation. They still aren't convinced it's not caused by a virus and will be running more cultures tomorrow. In the mean time, they are giving her an infusion of an immune booster in hopes that it will help her fight off whatever is going on.

Hopefully, when she starts to feel better, her interest in eating will increase. Until then, there's nothing to report. Just taking it one day at a time.

Wednesday, October 26, 2011

October 25-26, 2011 - Day 24 & 25



4 months, 3 weeks since diagnosis
day #34 of current hospital stay

X-ray is clean. Cultures are clean. Riker continues to be a coughing faucet of mucus but it is not an infection. She is tired and sleeps a lot but her poor body has been though a lot and is healing. Overall, she's doing well. Her x-ray showed that she is retaining a lot of fluid still and that it is putting pressure on her lungs. I didn't need and x-ray to tell me that. She's still up over 2 lbs over what she should be. I know my baby. The good news is that her weight was down today. She was down over a quarter of an ounce from yesterday and over 6 ounces from her largest weight. We're headed in the right direction.

Today they went down on her morphine to begin the weaning process. She seemed to tolerate it well. They will keep her at this dose tomorrow and we will continue to monitor.

Still, the only major issue that remains is getting Riker to eat. She continues to show no interest in a bottle. I have my brother shipping me the sippy that I got for her but I have doubts that will help. I also have my breastfeeding support group looking into syringes and tubes which might just work since she has an obsession with her tubes. In the meantime, the doctors suggested I try to get her interested in solid food as an intro to food. Mind you, Riker has not had any solid foods to speak of. These are exciting times for us and I will try not to be discouraged when she does not enjoy/take the food. Counter intutively, they suggested puffs or teething cookies. The doctor said, "we encourage junk food on this floor." Typically, it's the only first foods they can get BMT patients to eat. Here's hoping.

I have a very ripe banana in my room so I tried rolling it in some crushed cheerios for her. I don't have spoons and I highly doubt she'd be receptive to them at this point. I am trying very hard to make this an enjoyable experience for her. I have heard horror stories of children so sick of the spoon coming at them they they refuse to eat for months. Thankfully, she did enjoy the experience. I don't know if she actually ate any of the banana but it's a start.

Later, I ran over to Whole Foods and picked up some other supplies - puffs and teething biscuits (the least I can do is get her the better ones with less ingredients), an avocado, some whole milk plain yogurt and some dreaded jars of baby food. I made all of Valentine's baby food and I intend to do the same for Riker. Unfortunately, that's just not practical here in the hospital. One jar of sweet potatoes won't hurt :) We'll be out of here shortly and I can make her baby food til my heart's content.

So, we'll see what tomorrow brings. We'll keep offering a bottle and try the sippy or even a regular cup. I will keep offering food both for her to self feed and on a spoon. I will do my best not to push any of these as not to create an aversion. This is the last threshold to overcome before we can leave the hospital. If I have missed anything I can try, ideas are welcome :)

Monday, October 24, 2011

October 24, 2011 - Day 23

4 months, 2 weeks, 5 days since diagnosis
day #32 of current hospital stay

Today, Valentine had a small surprise birthday party with my in laws. I can't believe I'm missing so much but I am so blessed to have family and friends willing to ensure that Valentine is so well cared for while I'm away.

When her aunt pointed to the site they took bone marrow from and asked her what happened to her back today, Valentine said, "Oh, I'm just saving my Riker." (Those that know Valentine, I'm sure, can just hear her say that.) So her aunt asked her if that makes her a hero. Valentine then looked up at her aunt very serious-like and said, "Yup. I guess I am!" I am telling you guys, Valentine is growing up 10x as fast while I'm down here in Boston!!

Her birthday is a week from today and she'll be 3. I have no idea what will be happening with Riker at that time or where I'll be. I am trying really hard to focus on what's important and not sweat the small things. As long as we do something small as a family, it doesn't matter where or what it is. I so badly wanted to bring the girls trick or treating, though... it's Valentine's favorite thing to do all year long. She talks about last year like it was yesterday.

Riker continues to be stable and not much will change day by day at this point. We still haven't really weaned her down on any of her meds - I think we may try again tomorrow. The mucus in Riker's mouth and throat is still very thick and causes her to throw up pretty frequently. I'm hoping that lets up in a day or two. I still have been unable to get Riker to take a bottle. I am hoping that will be easier after the mucus clears up.

I have started to pay closer attention to the "little things" like Riker's weight. It seems she's still up 2 or 3 lbs in fluid. She smaller than she was but she's still way up from what she was when she was admitted. Since she hasn't taken much food since then, she probably hasn't actually grown much since then, either. I'm watching for her to come back down to her normal weight.

October 23, 2011 - Day 22

4 months, 2 weeks, 4 days since diagnosis
day #31 of current hospital stay

Riker is officially engrafted. Her ANC count has skyrocketed to an impressive 2,250. This is nearly a normal count and a number she hasn't seen in a very long time. It's exciting and relieving and scarey all at the same time to hit this milestone. The doctors are now talking about preparing us for discharge. The doctors are saying it might be as early as next weekend. In hospital time, that might be closer to two weeks from now, though. I want to leave so badly but at the same time, I'm scared to death of walking out these doors.

The bone marrow takes a lot longer to start making red blood cells and platelets than it does to make white blood cells. Right now, Riker is still needing regular transfusions and will likely continue to do so for months going forward. This will mean long clinic visits in the future.

Tomorrow, we're going to start weaning Riker off the morphine again. They will slowly start taking her off the antibiotics she's been on and have already converted the anti-fungal she needs to remain on to an oral dose that she can go home on. I was surprised to find out that, if they "have to", they can convert Riker's morphine and ativan to oral doses, as well.

The cyclosporine that she is on to prevent graft vs host disease (GVHD) causes Riker to have high blood pressure so they've given her a patch that will be replaced weekly and will give her medicine to help regulate her. Pretty much, the only thing we really need to get Riker to do is eat again and then we're out of here.

I've offered her the bottle several times today and a few times yesterday. The good news is that she's not upset by the offer but the bad news is that she's not interested, either. I hope that in a day or two, she'll want to try a little food. When she's feeling better and taking some calories by bottle, I'm excited to offer her some solid food, too.

So... now... the next big transplant milestone is day #100. That's when we start to wean her off the cyclosporine. That's the halfway point to "normal" if all goes well. So... until then, we keep counting the days. We get out of the hospital, we find a place to call home, we go to clinic for blood tests, medicines, and transfusions. We try to find a new normal amid restrictions and isolation. We work towards living a life where we can push aside the fear and go on.

Sunday, October 23, 2011

October 21-22, 2011 - Day 20 & 21


4 months, 2 weeks, 3 days since diagnosis
day #30 of current hospital stay

My family was together this weekend for the first time in nearly a month. When Valentine saw how much better Riker is doing, she exclaimed, "I DID IT! YEAH!" :) Yea, baby. Your bone marrow is a beautiful, perfect miracle.

Like clockwork, Riker's counts came up on day 20. Her ANC went right past 500 and shot up to 780. On day 21, it went up to 1,630. Only one more day above 500 and she'll be considered engrafted. The transplant is successful and the the riskiest point is behind us.

Next steps are weaning off the pain meds and getting her to eat. We're in no rush. The morphine had been reduced significantly in the ICU and it caused Riker to have withdrawals. We've gone back up to the original dosage and we'll be weaning her much slower. There is no need to cause her any discomfort. Plus, there is pain involved when counts come in. As the marrow grafts and settles into its new home, these side effects will pass and we can really focus on getting her off the pain and anti nausea medicines.

As for eating, Riker's not showing any interest yet. I've started making her 10cc bottles which is a third of an ounce. Since she's not at all interested, I don't want to waste milk trying to get her to take a bottle. At this point, there is still no concern about her not being interested. It should come. If it doesn't, there's always a cup or a sippy to try. We'll get her eating again.

I continue to be frustrated with things at the hospital, however. I know that overall they are a fantastic hospital and bottom line is they save lives. The could do better, though. Today, I found a pill in our room. Valentine had played all day on the table in Riker's room and when she left I found a pill. Lately, she's taken to putting everything in her mouth. I couldn't believe it. I had the nurse call pharamacy and it turned out to be Reglan. It's relatively harmless but what if it had been a narcotic? Or chemo? They really need to be cleaning better between patients.

Then, I went into the family resource room to print something on one of the computers. There was a little boy in there with his mother. He had one of the worst coughs I have ever heard. And his mom was wiping snot from his nose and then thumbing through the movies. I asked her if he was sick and she said he only has a cough. When I complained to the nurses, they said that he was ok. However, coughing and wiping snot, touching things and spreading germs is not ok on an oncology floor. What is causing the cough and snot may not be contagious but that doesn't mean that there are not germs in all those secretions. ugh.

So, for now, we wait again. Not much should change for the next few days. This won't be our home for much longer. Hopefully, we'll be discharged in 2 weeks or so. Hopefully, Jon's finding us all a place to call home very soon.

Thursday, October 20, 2011

October 20, 2011 - Day 19

4 months, 2 weeks, 1 day since diagnosis
day #28 of current hospital stay



My baby is back :) My little girl is back from the ICU and she's back to me. She's smiling and talking and full of spunk like normal. I almost don't know what to do with her. Just like magic, she healed overnight.

She was going to be sent back down to 6 west on oxygen but she did not need any. We've gone down two steps with the morphine and she's tolerated it well. She's now on the lowest continuous dose that the current machine she is using will allow. She's doing awesome.

This morning, her WBC was over 1.5k and her ANC was 420. She is so close to engraftment and could be there as early as Sunday. Now, our only major hurdles are to get her weaned off the morphine and get her taking in enough calories by bottle to get off the TPN. What wonderful things these are to worry about.

Hopefully, we'll be out of here very soon :)

Wednesday, October 19, 2011

October 19, 2011 - Day 18


4 months, 2 weeks since diagnosis
day #27 of current hospital stay

I cracked today. I have stayed a rock through chemo and morphine, awful mouth sores and a transfer to the ICU. Today I fell apart over laundry. I suppose it was coming. You simply cannot put on a brave face forever. But there I was, storming around the hospital sobbing like a maniac. Ridiculous.

Riker still looked good when I woke up this morning. In fact, she's been doing great all day. She sat up and played for quite a while. She was strong and aware. We're weaning her off her high flow oxygen so that she can go back to 6 West and we've even reduced the amount of morphine she's getting. Even better, her ANC count is up to 140! That's 1/4 of the way to the magic 500 :) It should have been a good day. It should have been a great day.

The ICU is a rotten place to be. There is no bathroom on the floor and you cannot eat or have you phone on in the rooms. This means I am constantly having to leave the floor. The past two days, Riker has had a dedicated nurse who spent much of her time in the room. Today, her nurse had two patients. The other patient is much sicker and required lots of attention from the nurse. I suppose I should be thankful that Riker does not need that attention.

The nurses are so busy that they couldn't be bothered to listen to me when I told them what to do with my breast milk. My frozen milk ended up in their fridge and I was lucky to have discovered it before I lost 30 oz of milk.

At one point, I went into the hall to find a nurse and waiting over 10 minutes before I found someone. When I expressed how concerned I was, I was essentially told that if I had an emergency, I could run down the halls and yell for help. In intensive care? are you kidding me?
I was unable to get help when Riker would throw up on herself especially in regards to changing her bed. How am I supposed to do everything myself when my daughter has oxygen tubes coming from one side of the bed and dozens of tubes for all her medicines on the other side?

But today had to be laundry day. Laundry couldn't wait any longer. Most of Riker's toys and her lovey were all covered in dried mucus and blood. The washer on 6 is still broken so I had to go down to the regular laundry room. This laundry room has 2 washers and 2 dryers for 400 beds worth of patients and families to use. This laundry room is in the furthest possible corner of the 1st floor. It's a long walk and difficult to find.

Since Riker has no immune system, no one else can touch her laundry. This is why 6 has their own washer and dryer. Unfortunately, other people in this hospital don't understand and don't have the curtesy to leave other people's laundry alone. Other people are in this hospital because they are sick. Other people don't understand how important it is not to spread their germs around.

I couldn't get down to the laundry room when my load was done because I got held up in the room with Riker. When I told the nurse I had to get my laundry she asked me if I could be back within 10 minutes. AHHHH It takes 10 minutes just to walk to the laundry room. When I got there, of course, someone had taken my clothes out of the dryer and put them on top.

This is where I fell apart. I just completely lost it. I started sobbing and stomping around. I came all the way back upstairs and back to my room. The nurse asked me if I was ok and, in between sobs, I barked at her that I was fine. I found 3 dollars and headed out to re-wash our laundry. Now picture this - I am crying - really crying - and another nurse asks me to take my breast pumps out of the sink so that they can wash their hands in it. There are a million sinks in the halls and medicine rooms. She had to ask me now?? I had meant to take care of it... I had also meant to get my laundry before it sat in the dryer for 45 minutes! So back I went to was and take care of my pump parts.

All in all, it wasn't important. The day shouldn't have been so painful. I failed to enjoy the victories of the day. When I came back from getting the laundry, I finally got that smile from Riker that I've been waiting for. The whole day was lifted from me for a moment. Then, I told the nurse and her response was that she had been smiling at her the entire time i was downstairs getting my laundry. Did she really have to take that from me, too?

Of course, she didn't really take it from me. I'm not sure why I felt that way. Again, I should have just been happy about Riker. All I can think is that this has been brewing like a storm. I suppose it's easier to lose it over these things because you can reel it in after you reason with yourself. When you lose it over your baby having cancer, there is no reeling it back in... even when you calm down, she still has cancer. There is no reasoning yourself out of falling apart because all reason says you should be falling apart.

Hopefully, we'll be transferred out of the ICU tomorrow. They are weaning Riker off the high flow oxygen overnight and if she tolerates it they will be transferring us as soon as a bed becomes available. Now that I'm over my fit, I will focus on this. I will find it in myself to be grateful for my daughter's health. I will lie here awake listening to her breath and hoping it stays steady and deep.

October 18, 2011 - Day 17

4 months, 1 week, 6 days since diagnosis
day #26 of current hospital stay

I woke up again this morning to see that Riker's breathing had again deteriorated overnight. I had stayed up until nearly 3 o'clock in the morning and she still seemed great when I went to sleep. The nurse woke me early in the morning to let me know they had ordered another chest x-ray to check for pneumonia again.

To me, she didn't look worse than she had the last few mornings. She was, however, visibly struggling to breathe again. Apparently, her CO2 levels had come back high again. She was definitely not doing as well as she had been when I went to sleep. Why do I ever sleep, again?

When the ICU attending that was on today came in to look at her, he was somber and indicated he didn't like the way she looked. He was very concerned and talked about intubating again. He indicated that it was likely they would today but wanted to first evaluate all the other contributing factors to the decision. He had not seen her yesterday and I assured him that she had looked much worse yesterday morning when she was transferred up here. Also, Riker always looks worse in the mornings and gets progressively better throughout the day. The doctors on the BMT floor had indicated that was typical for their patients.

Thankfully, the NP that was on yesterday was still on today. When she saw Riker, she indicated with obvious surprise that Riker looked much better than she had yesterday. As Riker woke for the day, she threw up and began to cough up the mucus that was sitting in the back of her throat all night. She actually got out some of the bloody flesh that had been falling off and obstructing her airway.

When the doctors rounded and discussed Riker's care, they decided they would wait to intubate her. Riker did not clinically look to be in distress and the airflow was keeping her stats where they should be. They would continue to draw her CO2 levels and keep a close eye on them in case she was getting worse because she was too tired to expel the gas from her lungs properly.

As the day went on, she got better again. She slept most of the day but she seemed comfortable and her stats remained stable. She even sat up and played a couple of times. I swear, a smile is coming soon. Her mouth is bleeding and has less skin hanging than it did before. You can see the fresh baby pink of her mouth showing through. I swear she's getting better.

An ANC was not drawn today but her last WBC was 400 up from 330 and she had an ANC of 40 last night down from 60 in the morning. That's a good sign - the ANC is still present. Labs will be drawn and a CBC will be run again at 4am today and when I get up in the morning I should have updated numbers. I have a good feeling that those numbers will be up. She's so close to day 20 - she's has got to be engrafting right now. Those white blood cells are healing her right now.

....waiting for those numbers in the morning!

Monday, October 17, 2011

October 17, 2011 - Day 16


4 months, 1 week, 5 days since diagnosis
day #25 of current hospital stay

Another rough night, another rough morning. Riker spiked another fever last night before bed. It was low grade and she was able to clear it up without the assistance of Tylenol. Still stressful and I did not sleep well. Riker moaned and fussed much of the night and it seemed she was in slight distress. Oddly, she did sit up and play for a bit last night. That has to be a good sign.

This morning, the nurse woke me to let me know that they had decided to have a consult with the ICU. From there, it was a whirlwind of events that didn't let up until the early evening. The fellow that looked at Riker could see that she was really struggling to breath and felt that it got any worse that she would need to be transferred up to the ICU. They prefer to do this during the day since emergent care is more difficult in the middle of the night.

Not too long later, another fellow came down and evaluated Riker. She decided that, even though Riker had not declined, she would be more comfortable transferring Riker to the ICU and giving her a more significant push of oxygen directly through her nose. She also indicated that intubating with such bad mucusitis would be very difficult and, if she declined, they may have to perform a tracheotomy so that she could breath. If possible, there first course of action would be to intubate through her nose as this would be easier than going through her mouth since her mouth is so bad.

This news was a relief and also devastating. I can see how uncomfortable Riker is and I only want her to feel better and not be in pain. I want her to be as safe as possible and take all the precautions that we can. However, no mother wants to hear that her child is going to the ICU. I want to hear that she is doing better. I want to hear that her counts are coming in and she is healing. I want her to be the wonder child that isn't effected by all the chemo like I've been so lucky to have up until now.

The transfer to the ICU was fairly quick and I barely had time to grab my bag before we went upstairs. I had to move out all our belongings so they could give her room to another patient. This was simply awful for me. I have 3 months worth of things for the both of us. Toys, blankets, clothes, food. I couldn't help but think about cleaning out our things and not taking my sweet girl home. I couldn't help but feel empty when that room was empty. I don't know how I didn't completely fall apart.

As soon as she was in a room, the doctors were quick to give her more oxygen and assess her. There were more than 5 in the room at the time of her transfer. It was unclear how much the intervention would help and if she did not improve, they decided that they would intubate in 2 hours under sedation. Again, it is easier to perform such procedures during the day than by emergency in the middle of the night.

After only a short period of time, Riker's respiratory rate dropped significantly and they were concerned that she was getting to tired to breath properly on her own. The decided to take more blood and measure her CO2 level again to see if it was more elevated. The doctors were shocked when they saw that her levels had dropped by half. The O2 is working! She looked like she was getting more comfortable so they decided not to intubate after all. :)

The good news is that Riker had an ANC count for the first time. ANC (absolute neutrophil count) is the magic number that we've all been waiting for. Her count was 60. She is considered grafted when the number reaches 500 for 3 days in a row. 60 is over 10% the way there. This means that things are starting to happen but it does not mean that her numbers won't be zero again tomorrow. Little blips are not uncommon and very normal during engraftment.

I truly believe that Riker is healing now. The doctors say that before the counts come in, all those cells go towards the area that needs healing first so you don't see them in the blood right away. I think that Riker's mucusitis looks worse because there are white blood cells in there. Just like a mouth sore that you or I might have, she is swelling as a "fat lip" does before it heals. Her mouth looks pretty bad - there is white flesh hanging from her pallet and some big chunks are actually falling off. However, this is all part of the process. The wounds are no longer oozing as much blood.

We shall see. I am hoping that we see a much improved Riker by morning. Already, she is sleeping and breathing more comfortably. She's not rubbing her mouth or face and all this rest has got to help.

The doctors are no longer concerned with her organs. They says that her liver, lungs and kidneys are all working as they should. Riker's bilirubin did not increase from yesterday which is a great sign. We don't know if this will change and there is still a possibility that they will go downhill. However, right now, this is great news one less thing to worry about.

Riker always gets worse at night. My hope is that will not be the case tonight. If it is, she will be sent down to the OR to be intubated. Again, just waiting.

Sunday, October 16, 2011

October 16, 2011 - Day 15


4 months, 1 week, 4 days since diagnosis
day #24 of current hospital stay

The nurse woke me up at 5am this morning to tell me that they had ordered an x-ray to check Riker for pneumonia. Riker's oxygen saturation had declined dramatically overnight and she was breathing very fast. Thankfully, when the results came back, it doesn't look like she has pneumonia. She does have fluid in her lungs but they cannot see infection. She's so swollen and all that fluid is taking it's toll on her body. She needs to start peeing more of it out than she's taking in.

Her liver is still enlarged and her biliruben is still elevated so they ordered and ultrasound to look at her liver. We waited all day for the procedure and results but the liver looks perfect. They still haven't ruled out the early stages of VOD or possible adenovirus which they will test for tomorrow with mucus cultures.

Right now it's a waiting game and I'm in hell. I am in a constant state of depression or anxiety. I am on the verge of tears and withdrawn and lethargic at the same time. She's on day 15 - counts should recover around day 20. I keep waiting for the decline to be over and for her to start getting better but it just doesn't seem to be coming! Everyday, it's "maybe tomorrow." ugh...

Today Riker is 8 months old. She has spent over half of her life in a hospital. Our lives have been turned upside down for over 4 months. Jon and Valentine have been separated from me and Riker for nearly a month. I should stop counting the days and the months but I cannot. I want to get off this roller coaster and I want to go home.

We've made some progress on finding a home, too. At least we're making steps forward, there. Jon and I have decided we'll try to find a home that already exists if we can have a full inspection and retrofit with whatever Riker's requirements are. That allows us to get in a new place quicker and widens our options. Now we just need to find a really really good house inspector.

I am going to push a lot harder with the doctors for answers tomorrow. I need to know what her requirements will be when she goes home so that we know what to look for. We cannot wait any longer for answers.

With any luck, Riker and I will have a place to call home with the rest of our family before the holidays. I so badly want to be with them - safe in our own home. <3

October 15, 2011 - Day 14

4 months, 1 week, 3 days since diagnosis
day #23 of current hospital stay

I had a lovely day with Valentine today. And I needed it, too. By the time the weekendRiker comes around, I am so drained and depressed, I don't feel like it will ever get better. Then I see Valentine. Each time I see her, she is bigger and smarter and more grown up. I am missing so much. She talks so well that sometimes it feels like I'm taking to a little adult - the cutest little adult you ever met.

Riker responds so well to her big sister. It is amazing how much they adore each other. When Valentine is with Riker, I don't exist. And to Riker, Valentine can do no wrong. Riker HATES to be messed with but Valentine can be all over her and she is so content. Valentine sang to her, "little Riker, little Riker, it's alright, it's alright - Valentine is here now" :) She looked up at me and said, "Mom, isn't sha a darling?" Yes, Valentine, she is.

The goodbyes were slightly less painful today. Coming back to Riker was more painful. She's had difficulties keeping her O2 up where it needs to be. The bleeding is extensive and obstructing her airway. With oxygen blow by and some adjustments, she is able to get it back up where it needs to be but the alarms are going off frequently.

The doctors were concerned by the excessive bleeding and thought it may have to do with her liver. Her bilirubin was up today, her liver is enlarged and she's gained 3lbs in excess fluids. These are all early symptoms of liver failure. Tomorrow, they'll get an ultrasound of her liver to see if it gives them any additional information. It is possible that she has something referred to as VOD. I googled it was too scarey to read much. I closed the window before I had a panic attack. Hopefully she won't have it and I won't have to read the rest of the information.

Tonight, her respiratory rate is up to compensate for the low O2 saturation. The alarms continue to go off and she continues to wheeze and gasp for air. I haven't really slept in days and I don't think that's going to change anytime soon.

Saturday, October 15, 2011

October 14, 2011 - Day 13

4 months, 1 week, 2 days since diagnosis
day #22 of current hospital stay

I almost passed out today. Riker's mouth has started to bleed so badly that I actually felt weak while trying to suction her. I didn't expect the bleeding to get so much worse - I thought it would get better. The blood pools in her mouth so thick and bright red. She begins to choke and starts to cough and spits blood everywhere. There is so much of it. And you can see chunks of flesh hanging from every part of her little month. It's horrible and for just a moment, I couldn't cope with it and I had to sit down. For just a moment, I had to let the nurse take care of her because I couldn't. And even though it was only a moment, I feel just awful about it. Moms don't get to have moments.

I suppose the bleeding has gotten worse because Riker is starting to feel better. She's started doing the cute "sucking thing" she does while she's sleeping, sucking on her bottom lip like a newborn. She has been putting her hands and toys in her mouth again. She's ripping apart all those sores and tearing off the scabs. Oh... and it's so awful...

I only clean her really well twice a day. Not that it matters anyway. As soon as I tediously clean most of the blood from her face, she's smearing a fresh bright red coat of it on her face and clothes. Cleaning it only makes it bleed more. It only aggravates her and causes her to rub her mouth and face more.

Still, the doctors are not concerned. She was giving more platelets today just to be on the safe side even though her levels were not very low. Riker continues to act stronger and is awake just a little bit more. She is also demanding to play more. It's nice to see even though it's also horrific to see. Mom puts on a brave face for her little girl, though. I promise you, little Riker, I will take care of you... I will not have any more "moments." I will always look through everything and see the beautiful little girl in there.

October 13, 2011 - Day 12

4 months, 1 week, 1 day since diagnosis
day #21 of current hospital stay

No news is good news. We're still playing the waiting game and Riker remains stable and fairly comfortable. I continue to sit watch at her bedside and talk to her for brief moments when she's awake. She even had a few minutes today where she sat and played. She didn't seem too happy about it but she was much angrier when I tried to lay her back down. I suppose it's frustrating for her to want to play so bad when she feels so lousy. It's amazing that she wants to try at all.

The fight is definitely back in my little girl. When I suction the mucus and blood from her nose and mouth, it rarely used to wake her. Now, she's waking to the sound of the tube coming close and thrashing her head about. She doesn't have much of a voice from all the sores in her throat but she is sure trying to tell us she's sick of this whole ordeal. I know, baby, Mommy is, too.

Thursday, October 13, 2011

October 12, 2011 - Day 11

4 months, 1 week since diagnosis
day #20 of current hospital stay

I am starting to feel more like myself today. I have been able to get some work done and have picked up the room a little. I am getting out for an hour or so every day. I have honestly been very depressed. I sit here helplessly all day long in the dark and it's been taking its tole on me.

Now it's time to get to business. Riker and I WILL be getting out of here soon. It may not be for another month before we can go home but we need a home to go to when we do get out of here. It is significantly less clear how long Riker will need to be isolated at this point. I think it's actually going to be something we have to play by ear. The original 6 month plan is a minimum. She could be on house arrest for a year or more. Then what happens if she relapses? God forbid, what happens if we have to go through this all over again? It happens all the time.

Jon is feeling down and he's lost steam on finding a place to live. We were going to build a custom home with air filtration for Riker but the land fell through and now there isn't time. We don't know what to do... find a temporary solution while we build? Find a newer home and retrofit to our needs? I feel helpless from so far away. Jon has put so much energy into this and he just doesn't have anything left.

I plan to meet with the oncologist tomorrow to get a sort of checklist of requirements and wish list items for a home. I am also going to ask about companies that can evaluate a possible home for us. Once I have that information, we'll have a better idea of where to go next.

Today, Riker remains the same. We're just playing the waiting game and thankfully, she's sleeping through most of it. It has been so long since I've seen her smile. I look at pictures and cannot believe she ever looked so brave and happy. Soon... soon I'll be able to enjoy both my girls' smiles at the same time. I want to hear their laughs fill my house.

Wednesday, October 12, 2011

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 :)

Monday, October 10, 2011

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.

Sunday, October 9, 2011

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.

Saturday, October 8, 2011

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...

Thursday, October 6, 2011

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.

Tuesday, October 4, 2011

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 :)

Monday, October 3, 2011

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 :)

Sunday, October 2, 2011

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.