Today, this weekend, and Monday…

Today is a big day because we are taking Raven in for blood counts at the clinic. Depending on what they say today, we will either have a very crazy Monday or only a sort of crazy Monday. That’s because Raven is scheduled to be admitted to the hospital on Monday for an LP and more chemo. Sunday night I am being induced which means Monday both Erik and I will be at the hospital for a totally different reason. So far we have scheduled people to help us if Raven does not need to be hospitalized, but if she does need to go in, we will be in a whole different situation.

I was told by Raven’s nurse that the only way for us to have someone else take her into the clinic was to have a signed power of attorney so today we will go over that with them to make sure we can have someone who will be able to take her in…

Honestly at this point, I am a jumble of emotions. Mostly I can tell you I feel a little unsettled. I hate the idea of not being there for her if she needs to be admitted, but I know that no matter what she will be with someone who cares very much about her and will do the right things for her. I’m also nervous about delivering. Excited but nervous and I’m anxious to get it over with. It’ll be nice to just be able to do things again. Bed rest is no fun especially if you’re like me and need to move around or do something to stay sane.

So with everything we have going on this weekend, I am going to do my best to enjoy the last few days with my family before things get a little crazier. Hopefully today we can get everything worked out with the whole power of attorney situation and we can nail down our plan for this weekend. Keep your fingers crossed for us this weekend. Say prayers. Put positive energy out there. We need all we can get! ; )

Fever scare!

Last night we got a little scare. Raven has had a little head cold for almost a week now and we’ve been using Vicks and a humidifier to help her breathe at night. Some nights have been worse than others, but overall she’s been okay enough to make it through the night without any major problems. That was not the case yesterday though.

Let me start out by telling you a little about her follow up appointment yesterday. Raven had a platelet transfusion on Monday because her platelets had dropped to 20,000 so the nurse wanted to follow up to make sure they were where they needed to be. I have to tell you that after the last dose of Methotrexate and the problems we had, I was nervous that she’d come in and say her platelets had crashed again and that she’d need to be transfused again. I was pleasantly surprised though when she came back into the room and told me that her platelets were at 106,000 and her h&h was stable enough that she could go home transfusion free. She did however warn me that Raven was severely neutropenic, and that we’d have to be extra careful so as not to get her sick.

So fast forward to 2:30 this morning when we woke up to an almost screaming little girl… I got up to soothe her and to see if I could maybe put some more Vicks on her chest and as soon as I touched her I panicked. She was burning up. I picked her up and took her temp three times. The highest was 100.2 and not technically a fever so I decided to wait half an hour and take it again. It was 99.9. Still high and even though not technically fever territory, after yesterday’s news of her being so neutropenic I decided to call the after hours number to see what I should do.

The nurse called me back and told me to get Raven out of any covers and re-take it after 3o minutes to an hour and if it had crept up to past 100.4 to immediately take her to the ER. I kept Raven in bed with me not sleeping the whole time worried that she’d have a fever. Luckily, her temp went down to 99.6, which although still unsettling to a worried Mom like me, was enough to reassure me that she would be okay to sleep in her own bed at least for the next 3 hours before she woke up again and we could take her temp again.

Erik woke up with her this morning around 7:30 and he just informed me that he’s taken her temp about six times and all of them have been within the normal range. I hope that she stays in that normal range tonight and we have no more fever scares. That’s the last thing we need right now! NO FEVERS!

Appointment day!

Today started off really, really early with my trip to LabCorp to have a second glucose tolerance test done. I waited a long time (probably longer than I should have) to do the first one and after I finally took it, I found out I didn’t pass. I was talking with my Aunt who’s a PA and she asked me if I ate before the last test and I told her I had. She laughed at me and told me that that was probably the reason I had failed and told me to tell my doctor because he may not make me take the second test. I told him, but because there’s been so much that’s already gone on this pregnancy, he decided it was better to be safe and just take a second test. I was kind of bummed because that glucola stuff you have to drink is absolutely nasty, plus I knew this test would be a three hour fasting test. I decided my best option was to just go in as early as possible and get it done with. I looked up when LabCorp opened and decided to get there then, but to my surprise this morning, they had opened a half hour earlier and there was already a large crowd. It took me about an hour and a half to be seen and when I finally got into the room, I was hit with my second surprise. I would have to have blood drawn four times. Once as a starting point and once every hour until I hit the three hour mark. To those of you who don’t know, I have a terrible fear of needles so I was not a fan of the news. I took it like a champ though and just closed my eyes and held my breath while they took what they needed. Finally it was over and I immediately got something to eat! I won’t know the results until next week though. Hopefully they come back fine and we have one less thing to worry about. Fingers crossed…

After I came home, I had about two hours to lounge around before Erik and I had to take Raven to her appointment. Raven had blood drawn at the hospital lab on Saturday and everything was fine but her platelets, so I was anxious to see where they’d be at today. I had a feeling they wouldn’t be much higher if any at all. They were actually incredibly fast about it today. The doctor came in to give us the news and talk with us. White count was fine 1.7, h&h had actually gone up to 8.7 and 29, but the platelets had only gradually gone up from 32,000 on Saturday to 39,000 today. ANC was good about 1025.

The doctor discussed his plans with us after that. He said that as of yesterday, Raven was two weeks delayed from treatment and that it was common for Downs patients to be delayed because of low counts. He told me he’d check other patients charts to compare and see if there was a trend for delay, but he said basically that he felt everything was okay still. His plan is to bring us back Monday to re-check counts and see if she’ll be ready then. Hopefully her platelets will jump up enough to get the ball rolling again. If for some reason they are not where they need to be, he’ll have us come in the following Monday to check again. If at that point Raven is still not where she needs to be, he will have us come back that Wednesday to have another bone marrow biopsy to make sure she does not have any lymphoblasts there. He told us he’s pretty positive that her bone marrow is still clear (in his words he’s “99% sure she’s okay”) and that the only problem is that she is just a slow healer, but again better to be safe than sorry.

Erik and I left there feeling fine about the appointment. We’re not where we need to be right now, but everyone agrees that she is doing great right now. So far (knock on wood) we’ve been hospital free for the longest time since diagnosis (about 3 weeks now) and she’s been fever free, eating, and happy. She’s looking great and we are glad to be able to have some normalcy lately. Today we actually got to eat out as a family for the first time in probably five months. We went to Jax Fifth Avenue and ate sandwiches outside in the gorgeous Florida weather and it was nice to be together enjoying the afternoon. We’re all home now and back to what we’ve learned to do so well these last few months which is just wait for word on what her counts will be and what will happen next. I’m just glad to be home again and I know Erik and Raven are too.

Today’s visit

Today Raven had a doctors appointment to have her counts checked. We got there about an hour early because my appointment got cancelled, but they managed to fit us in. It was a relatively quick appointment. Finger stick, wait for counts, then the news…

Raven’s platelets were down from 75,000 on Monday to 45,000 today. Her ANC is also down from about 1250 to 793 and her h&h is holding steady at around 7 which is low but not enough to transfuse. Overall, everything was okay except her platelets. Not exactly what I wanted to hear to tell you the truth. I was hoping she’d be okay enough to be admitted and get on with treatment, but she is our slow recovery girl so we continue to wait. As long as she doesn’t have a fever or infection, I am truly grateful, but I do want her to get on with treatment because I don’t like her being delayed.

Raven’s nurse wants her to come back on Saturday to go to the outpatient lab and have her counts checked again. I hope she’ll be okay and not need a transfusion. We have another follow up on Tuesday and if she’s good than we can be admitted for chemo. The more transfusions she needs, the longer it takes for her to get back on schedule so hopefully she can start to recover on her own.

She’s pretty happy though lately. She’s been playing and has been so super cute. Every time we go into the clinic, she waves and says hello to everyone she passes. She blows kisses to some people and she makes everyone smile.

On a side note: Last night I had to go to L&D again to have them stop my contractions. Last week I was having shallow contractions and they gave me the terbutaline so they wouldn’t turn into real contractions. Yesterday they were actually more of a full contraction, so I got worried and went immediately. I was only having about 3-4 an hour which isn’t enough to call labor, but they wanted to give me another dose of the medicine so they would stop. They said I was dehydrated which could have been the cause of my contractions, so they want me to drink as much as possible. I’m fine today though and as long as he keeps baking until May 2nd I’ll be a happy girl. Say a prayer!

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.

Not normal…..

Yesterday I had a conversation with one of Raven’s doctors. He is pretty much the top guy of the three doctors who sees her. He’s been at this the longest and has been treating kids with cancer for a long time. He told me that for the second day in a row Raven’s counts were down. They had been at around 2.3 for her white count and her platelets were bouncing between high 70′s to mid 90′s making her ANC around the 1000-1600 mark. Saturday and Sunday however, her counts dipped to about .9 for her white count and her platelets were down too making her neutropenic. Saturday she also just started looking miserable with a red nose and just a general sick look to her. It almost looked like her cheeks were breaking out too. It really started to worry me ,but since she didn’t develop a fever and she actually started eating, I was slightly encouraged that she was fine.

When I talked to the doctor yesterday, he said he was kind of worried though that her counts were down. He said the chemo she had received this week was not enough to make her counts drop the way they had. He also agreed with me that she looked miserable and he was worried that she was beginning to harbor a virus. He told me that they’d just continue to closely monitor her and that just as a precaution, they would re-culture her bottom lip just to make sure there was nothing viral beginning to grow.

As of yesterday and today, the only sores she has left are on her bottom lip right in the middle and two little spots on either side of her tongue. They are pretty small though and she’s been okay enough to start eating again so we are encouraged that she’s doing much better.

For me as a mom, I tend to think about all of the things going on with Raven and I try to ask as many questions to make sure I’m informed about what’s going on and what we can do to help her recover. I must admit that I’ve been thinking a lot lately about how much we’ve been here with her in the hospital and how “not normal” all of this is for a kid with A.L.L. so I asked the doctor why this was happening to her. I asked if the fact that she had Down syndrome had anything to do with it. He told me that this kind of thing is not really normal but that it does happen occasionally to children with and without Downs. He said that it may be that she is more sensitive to both chemo and to infections due to her having Down syndrome but that it may also have to do with genetics. She just may be one of those kids who takes longer to recover from things. Hearing all of that was not really comforting and I admit I found myself worrying if she’d be able to recover from A.L.L with the same statistics as other children so I asked him if he thought her chances of recovering were still good. He didn’t even hesitate and said that she would be fine. He told me that she would have the same statistics of recovery as if she had never had any of these complications and once again he reassured me that even though none of this was normal, he did see things like this from time to time and that with each case those kids did just fine in the long run. They just may have had a tougher go with it than others. That did make me feel better and I’m glad I had the courage to ask him what had been on my mind for a few days now.

So here we are. Not in a normal situation but okay. Raven continues to amaze us all and we continue to pray that she does well in treatment and that she avoids any more infections.

We still aren’t sure when the doctor will decide to start interim maintenance. It’s scheduled to start on Thursday if her counts are okay but with all that’s gone on in the last two weeks, they may decide to hold off until later. We will talk to the doctor today and discuss our best options for her treatment and of course will keep everyone posted when we find out what’s going on.