The last few days…

For the last couple of days, Erik and I have been trying to slowly tackle the mess that is our house in preparation for our little man’s arrival. On Wednesday, we decided to get the kid’s room together. Erik built the crib and we (or should I say he) started taking down the boxes of baby stuff we have packed away. He also built another dresser so we’d have enough room for both of their clothes, shoes and odds and ends. By the time all that was done, Raven’s room looked like it had been bombed. I wanted to help out so badly but knew I was limited in what I could do so I sat in a bean bag chair and put clothes on hangers so he could hang them up. I also went through a few boxes he handed to me so we could get more done at once and I ended up putting away her stuffed animals because I just couldn’t take seeing them all over the floor. It was fun but kind of sad looking through Raven’s old baby stuff and thinking about how much our little girl has grown. It’s been really tough to be on bed rest because I’m the kind of person who wants to do things and sometimes I just want them done my way and it’s hard to not be able to be as independent as I’d like. I know taking it easy is in both mine and the baby’s best interest though so I really do try not to exert myself too much. That being said, I’m human and I make mistakes and I definitely know by the end of the night I had probably done too much because I was feeling exhausted, but just couldn’t help myself.

Thursday morning, I was feeling a little bit better and decided to go my bedroom with Raven and Erik and watch him clean up. My intention was to just lay in bed with Raven and talk to Erik about where we should put some things, but I ended up sitting in a chair in the corner of the room and going through some things in boxes. I thought that if I was sitting down I’d be fine. After about an hour though, I started to feel really bad. Erik had to get ready for work and I decided to just try to take it easy. I laid on the couch with Raven and relaxed as she took a nap and in the afternoon my mom and my friend Tammy came over to keep me company. By this point, I was definitely not feeling good. It felt like every time I stood up, my belly would get tight. I wanted to just put it out of my mind and told myself to just drink more water, but around 9:30 I knew something wasn’t right. I kept feeling that tightness though and with all that I’ve gone through so far I thought it was better to be safe than sorry. I called my doctor and told him I was worried because I just felt too uncomfortable. He told me to go to the hospital. I didn’t want to wake Raven up so I called my dad and he said he’d take me in so Erik could stay with Raven.

When we got to the hospital, it was almost midnight. I got into the room and they hooked me up to a monitor to see what was going on. Within twenty minutes, the nurse came in to tell me that I was having shallow contractions about every three to five minutes. She said because they were only lasting a few seconds, they were probably just caused by irritability. False labor. She said they could be caused by exerting myself too much or by stress and asked me if I had anything that could be stressing me out. I sort of laughed and told her about everything that has been going on in the last few months. She and I talked for a few minutes and she told me that those mini-contractions could turn into the real thing and she and I definitely did not want to see that happen so she left to call my doctor to see what his recommendations were. About five minutes later, she came in and told me I would be getting a shot of Terbutaline to stop the contractions. She said it would burn and make me jittery (which it did) and that I’d have to be monitored to make sure they stopped. She said if they didn’t that I’d have to have another shot but thankfully they stopped almost immediately. About an hour later, she released me and told me that I’d have to see my doctor to follow up. This was about 1am so needless to say I was not stoked about the idea of going to two doctors appointments yesterday unsure of what would happen at either.

After about five hours of sleep, I made it to my doctors office. I told the receptionist that I had gone to L&D the night before and that the doctor wanted to see me and she told me she’d fit me in as soon as possible. Within about 20 minutes, I saw the doctor. He asked me if I was still having contractions and I said no. He and I talked for a few minutes more and then he gave me some bad news. I failed my glucose test which means I need to do a follow up test in the middle of the week. He says if I fail that one too I will need to go on a special diet to make sure the baby and I are healthy. I’m pretty bummed about it to tell you the truth. As if I needed one more thing to worry about… He told me I didn’t fail by a large margin so it could be a fluke, but who knows. I just hope the next test is good. Normally, you start seeing the doctor weekly around the 36 week point, but because of everything happening with me lately, he wants to see me weekly starting now. I made a joke with him after I had the cerclage put in that we’d be best friends by the time this was over. Little did I know then how much we’d actually be seeing each other.

After that appointment, I rushed home to watch Erik pack a bag for us just in case we’d be admitted for more chemo with Raven. We made it to her doctors appointment on time somehow and then waited for what seemed like forever to hear what her blood counts were. The doctor came in and told us that her ANC was good (about 1250), but her hemoglobin and hematocrit (h&h) were low and her platelets were critical. Her platelets were at 20,000 which is the cut off point for transfusion. The doctor said the platelets were a must for transfusion but asked me if I wanted to go ahead and wait to give her blood because the h&h levels were still okay. I knew with Erik leaving for work that the day would be extremely long if I did both so I told him to just do the platelets. The last time she needed platelets we were able to stay in the clinic and do it which made the process much faster. Unfortunately, yesterday they did not have enough staff to keep us there for transfusion which meant we had to go to the dungeon otherwise known as outpatient pediatrics so Raven could get platelets.

My mom left work early so she could be with me and Erik could be on time for work. I felt bad that she had to wheel me around so far. The trip from the clinic to outpatient pediatrics feels like it’s about a mile long, maybe more but my mom is a champ and she got us there. I honestly don’t know what I would have done without her yesterday. Thank God for moms.

I was kind of irritated when I got to outpatient because they need to type and cross Raven which takes about an hour. We have kept Raven’s blood bank bracelet on her and I was told she’d be fine to just go in and get transfused as soon as we got to outpatient, but nobody double checked and so we had to wait. By the time Raven actually started getting blood, we had been waiting for 4 hours. I was exhausted and I could tell my mom was not digging the fact that we had to wait that long for what should be a much quicker procedure. Thankfully, Raven and I got to nap for about an hour and a half though which made me feel much better.

Because Raven needed to be transfused yesterday, she was definitely not ready to continue with chemo. She needs to have 75,000 platelets and her ANC needs to be 750. She also cannot need blood which means that she will probably not be ready for chemo at least until the middle or end of next week. She is definitely not on schedule as far as treatments are concerned, but she really hasn’t been for months. The positive is that she’s doing great right now. Her doctor was very pleased to see her looking so good. She hasn’t had any fevers which is the most important part and she’s been really happy and playfully this last week which is nice to see. Hopefully she continues to be fever free and hopefully her counts recover by next week so we can get back on schedule for chemo. Monday morning is her next appointment so we’ll know more then. For now we’re enjoying our weekend just lounging around the house.

Transfusions and a trip to Grandma’s house

Today Erik and I had to take Raven to the clinic to have her blood drawn for counts. The plan was to see if they were good enough to have her admitted on Monday for more chemo. I thought for sure everything would be okay because she had just had two transfusions on Monday, both blood and platelets. Unfortunately that was not the case. I don’t know why I expect things to go smoothly. By this point, I should expect things to be bumpy, but I can’t help but try to be optimistic when we go to these appointments.

When the doctor came in and told us her platelets had dropped to 14,000 I was instantly upset. He also told us her white count had dropped to 0.8 which meant her ANC was probably low too. More neutropenia…. not what I wanted to hear. He requested her differential to make sure what her ANC was and we were told later it was 348. Not terrible, but not great. He was actually pleased though that it hadn’t crashed all the way. He told us to hold off on the chemo we have been giving her at home and to hold off on her other medications too.

Raven has been on vancomycin for about a week now and yesterday she had labs drawn to see what her levels were. Apparently vancomycin is one of those antibiotics you need to really monitor to make sure the levels are just right. Too little and the medicine is not effective. Too much and it can negatively affect your kidneys. Yesterday Raven’s levels were “toxic”… When I heard the word toxic I kind of freaked out a little bit. I started asking the doctor questions and he reassured me she would be fine as long as we stopped giving her the medicine. This antibiotic runs through your system quickly when stopped. Just to make sure she was okay, he had labs done to check levels to see how the medicine was affecting her kidneys if at all. Just before we left the clinic, the nurse told us her levels were just fine. Nothing to worry about with her kidneys. She is okay. Thank goodness.

Erik had to go to work at 2 today and I knew he’d be really late if he stayed with us for the whole transfusion. Luckily, my dad was off today and came up in the afternoon to sit with us and take us home so Erik wouldn’t be too late. He got there about half way through the transfusion and we talked and laughed a lot while waiting. When the platelets were done, I had to wake Raven for the nurse to take vitals and for us to get going. She wasn’t thrilled. I always feel bad when she wakes up to people messing with her, but unfortunately it’s a necessary evil. Raven was great though and soon we were on our way.

On the way home, I asked my dad if we could go see my Grandma who I haven’t seen in a long time. We called to tell her we were on our way and true to her, she got a little freaked out that she didn’t have anything prepared for us to eat when we got there. She’s so cute and funny about that. I guess it’s the Puerto Rican coming out in her. You must be fed when you come over. There is no saying no. She’ll just keep asking until you eat and even though she didn’t have anything prepared, she made us empanadas just so we’d have something to put in our bellys. She also made me eat rice and beans to make sure the baby was being fed. She’s so cute and tiny and I love her. It was really good to get to see her today. Raven gave her a hug on the way out and blew her kisses and I’m sure that made her day.

When we got home, I got a call from Raven’s doctors. The lab results for the vancomycin were back and her levels had dropped to normal so he wanted us to continue giving it to her. He said he’d send a nurse to draw more labs tomorrow just to make sure she was still at the right levels. The good news is that we can give it to her every 8 hours instead of every 6 which means more sleep!

We’re scheduled to go in on Tuesday to see how her counts are then. Hopefully they will be okay enough to start treatment again. If not, we will more than likely have to go in later next week to re-check counts. In the meantime, we get to hang out at home which is always nice.

World Down Syndrome Day

In honor of World Down Syndrome Day, I figured I’d reflect back on the last three years of our lives…

If someone would have told me three years ago that in less than three months my daughter would be born with an extra chromosome, I would have told them to shut up. It couldn’t be possible because we had been seeing a specialist who told us so. With a less than a 3% chance, how could that be, right? Well I guess sometimes things don’t go as planned.

When Raven came into the world, I was so scared. She was so tiny and we weren’t supposed to have her for another six weeks. I didn’t know what I was going to do. I was devastated when I couldn’t hold her because the doctors had to make sure her lungs were working and she was stable. I was in a drug induced state when the pediatrician came into the room and told me that they’d need to do genetic testing to confirm what was only supposed to be a 3% possibility. Again, I was scared.

When we took her home, I was scared some more. I didn’t really know what Down syndrome meant. I decided to call the Down syndrome association in town and find out some more, but to tell you the truth I was scared at what I’d find out. I did it any way and told myself that whatever came I’d be okay. I didn’t know what I know now.

The last few years there have been so many times where I have been scared. I’ve been scared that my daughter would never do things a “normal” child would do. I’m not kidding when I say I thought she’d never smile at us. She did of course, but for the longest time she just stared intensely into our eyes- no smiles.

I’ve been scared about what her life would look like when she grew up. Would she go to college, learn to drive, live on her own, marry? I’ve been scared at doctor’s appointments. I’ve been scared when reviewing how she’s done on evaluations. And most recently, I’ve scared at her leukemia diagnosis and all that’s happened in the last four months. So many times I have been terrified about so many things associated with her having cancer.

But through all of this fear, there has been so much joy. My baby girl has made me smile more than anything else in whole world. She has also taught me so much.

Here’s what I know now: My mornings would be awful without the sound of her voice and my day would be incomplete without her smiles, hugs, and kisses.

Raven has taught me to smile more and frown less. She’s taught me to say hi and wave to strangers. It brightens up their day to know that they are not only seen, but acknowledged. She’s taught me to be brave. She’s the bravest girl I know. She’s also taught me to keep on going. When things are tough, she keeps going. And if she can keep going through therapies and treatment than I can too. She’s taught me to try to be joyful no matter what. I’m not going to lie. Things can get so overwhelming at times but I try to pick myself up and remind myself that if my two year old baby girl can do it than I can too. She makes me stronger.

There’s not one hour of the day where I don’t smile because I have her in my life. While putting together pictures for Raven’s birth through one year album, I couldn’t help but smile and laugh so many times. Raven exudes joy and makes it tough for people not to love her.

I know there will be jerks in the world who will make her cry and I know that a lot of things won’t be easy for her as she grows up. I know that Erik and I will cry many tears watching as she struggles with the rest of her treatments and throughout her life because things are tougher for her than they would be for others. I also know that with her determination and spirit we’ll get through it. She’ll teach me many more things throughout the years and she’ll continue to make my heart swell with so much love and joy that at times I’ll think it’s ridiculous that it hasn’t burst.

If someone would have told me three years ago what would be in store for me, I wouldn’t have believed them. I wouldn’t have known if I wanted to continue, but I am so grateful for these last three years. They’ve been the most challenging of my life. They’ve also been the best. I love Raven Rose with all my heart and there’s not a thing in the world that can change that!

I have no idea what’s going on…

I mean, I kind of know what’s going on, but I don’t know what happens next…. Let me explain…

This morning the nurse who works with Raven’s oncologist came in to tell us how Raven is doing. She told me that the levels of methotrexate in Raven’s blood are down around 0.05 which is great, but because there was still a trace of the chemo, the doctor wanted to give her another dose of leucovorin. She also said that because the levels are so low, she would be exchanging her IV fluids from one meant to flush out the methotrexate to a more normal solution with a little added potassium because those levels were a little low. She listened to Raven’s chest and checked her out and said she looked great.

Then she hit me with the bad news. Raven spiked a fever the day she was admitted and they drew cultures to see what was going on. Today the cultures came back showing something called coagulase-positive staphylococcus. I asked what that was from and she said it’s a common bacteria found on skin. She said that it was a very easily treatable infection.

Two things went through my head when she told me that. The first being that I was glad it was not bacillus again because if it was bacillus, Raven would need surgery to replace her port and that’s not what I wanted to happen at all. The second thought was that she keeps getting things from her own body and it’s driving me nuts! She’s had infections from her own intestinal tract, an abscess from e-coli caused from her having diarrhea, and now this infection from bacteria on her own skin. It’s driving me nuts.

Raven spiked another fever last night and they drew cultures again. Those cultures came back negative which was good, but Raven will still need antibiotics to make sure the infection goes away and stays away.

Here’s where I don’t really know what’s going on… Originally, we were supposed to be here for the chemo treatment and once Raven’s levels were completely down to zero, we’d be released and we’d get to go home. Now because of the infection, I don’t know how long we are going to stay here. The nurse wasn’t sure either. She told me that they’d likely draw more cultures to see if those continued to come back negative and in the meantime Raven would be on antibiotics. She said she wasn’t sure if Raven would have to stay in the hospital or if we could go home and give her the antibiotics there. She’s going to consult Raven’s doctor and see what he has to say. For now we’re just hanging out here in our home away from home waiting to see what happens next….

Just an update…

I realize most of you keep up with me on facebook through my personal page and the Raven’s Journey page, but I figured since I had the time, I’d write a slightly more detailed version of what’s been going on with us.

On March 3rd, Raven was released from the hospital after a 32 day stay. We had gone in for an initial infection which was cleared almost immediately, but because her counts were low, we had to stay. Then the horrible mouth sores appeared, otherwise known as mucositis. And finally a rash all over her face. After many tests, Raven was finally cleared to go home and we were relieved to have some time to relax in a place we haven’t spent much time in since November.

Since we’ve been home, Raven has been mostly content but has had many cranky moments. I can’t really say she was happy at first, because she was still suffering from the mouth sores and the rash on her face. It’s been hard on us trying to figure out what would make her happy sometimes because we cannot communicate with her as well as we’d like to be able to. The first two days home, I was worried we’d have to go back to the hospital because she was not eating or drinking much, and it was all I could do to get the minimal amount of both in her. By day three, things got a little better. Raven ate more and started drinking more too.

These last two days, we’ve started to get a glimpse of the happy baby girl we are used to. She’s woken up happy and not crying. She’s played and crawled around on the floor and has eaten much more. She’s been really cute signing a lot and smiling and talking and it’s been nice to see her start to feel much better.

Yesterday, even though she was feeling better, she refused to drink anything until about 4:30pm. I have to admit that I started to get really, really worried…. so much so that I called my mom to come over and help me try to get her to drink. By bedtime, Raven had managed to drink about ten ounces.

Around 7:30 last night, I asked my mom if she could help me get Raven ready for bed. She picked out clothes for her and came to the living room to get her dressed. As we were pulling off her shirt, we noticed that Raven’s port was swollen and red. Not gonna lie- I kind of freaked a little when I saw it and immediately grabbed my phone to call the doctor. A few days ago, at the follow up appointment for Raven in the clinic, I had talked to a mom who’s four year old son also has cancer and she was telling me about how he was on his third port. She told me that his first one had broken and last night when I saw the swelling on Raven’s chest, all I could think was maybe it had somehow broken.

Raven had been sitting with my mom a lot yesterday afternoon and at one point went to slide off of her like she’s done a hundred times. This particular time something must have happened though and she screamed and started crying. My mom immediately picked her up and the crying stopped so we figured she must have been scared. It’s been tough lately watching her go from this girl who was starting to walk everywhere, could pull to stand and sit down or get down independently to now being afraid to even try to do those things. My mom and I didn’t know what to think though and decided to check her temperature which turned out to be totally normal and just hold her and wait to hear from the doctor.

The doctor and I talked and agreed that since there was no fever, we’d just go in this morning to see him and check out her port. We went in bright and early and he ordered a chest x-ray. After the x-ray, we spoke with him and he told us that everything looked fine but after talking with the radiologist, they recommended an ultrasound to make sure there wasn’t fluid surrounding the port. We went down and did the ultrasound and waited for what seemed like forever to get the okay to go home.

Again, to be honest, while I was waiting I kept thinking we’d have to be admitted. I think the fact that we waited for so long made me feel like it would be bad news. The ultrasound tech said there was fluid around the port but that he needed to talk to the doctor to see what would be our next step. We haven’t had much luck these last few months and even the nurses joke that it seems to be that whatever can go wrong with us probably will. I’m glad we can all maintain a sense of humor about all of this but at times I cannot help but feel overwhelmed and upset that so much has happened to our little girl. All I kept thinking was “please don’t let something else happen.”

Finally, after the long wait, the nurse called my cell phone and told me that the doctor cleared us to go. She told us that he was not too concerned with the fluid around the port and to just keep a close eye on it to make sure it didn’t get worse. I was so relieved. I honestly can’t even explain the feeling I had knowing that I didn’t have to have my mom go home and pick up the emergency bags I packed this morning for the “just in case” admission.

On the way home, Raven slept and she napped for another two hours once we got home. Our plan is to go in as scheduled Monday morning, check her port again and her blood counts and if all is well start interim maintenance. I just pray that the next 36 hours or so nothing else happens and my happy baby will be able to relax, eat, drink and play without any more unexpected “bumps” in the road.