Saturday, January 29, 2011

Round One goes to..... CARTER!!

That's right, we are done with the first round of chemotherapy!!! Last night was the last dose of the yucky medicine (for now)!!!! I made this sticker chart for Carter a few weeks ago. Every time he took his medicine, he got to choose a sticker and put it on. Last night was the last sticker so he got his "special surprise".....

an awesome craigslist find

Sorry about the messy garage :/ It was cold and dark outside. Plus the battery for this bad boy wasn't charged up so they could only sit in it anyways. We are all so happy to be done with this round! We had our clinic visit yesterday as well. Carter was scheduled for another LP and bone marrow aspirate at 1:00 which means he couldn't eat anything after 7am. I was really worried because this boy eats more than I do these days, thanks to the steroids. Every ten minutes, he's telling us something else he wants to eat. But he did really well all day without food. He just keeps impressing me more and more each day. By the time we got to the clinic, he was reaching his limit. It's a good thing we were scheduled with his favorite doctor. I don't know exactly what it is about this particular doctor but Carter really likes him and always does exactly what he asks him to do. It's really cute actually. After the nurse took some blood, she came back in a few minutes later and announced that she had good news. Carter's blood counts are all looking really good. His white blood cell count is 4500 with an ANC of 2000!!! That's well into the "normal" range! It won't last long because he'll be starting on new chemo meds next week, but for now, it's awesome! Hemoglobin is 7.5 and platelets are in the normal range as well at 192,000. We are happy. His ANC needs to be at least 750 to start the next round and it looks like that won't be a problem at all. After the CBC, they took us to the procedure room for the two procedures they needed to do. They let me hold him until he falls asleep:
Then once he falls asleep (it only takes about 10 seconds, if that), they help me lay him down and then I'm shown the door. I go wait in the toy room until they come get me.

I took this picture while I was waiting for him to wake up afterwards. He's got great eyelashes. Once he woke up, we gave him all the food and drink he wanted and then headed home. I think he ate constantly until he went to bed. All day today he keeps reminding us that he does NOT have to take his yucky medicine. I guess he doesn't want us to forget :) So next week we should find out the results of all the tests and everything and have a better idea of what will happen from here on out. This first month is a lot of gathering information to determine what his exact treatment will be. So here we go! One month down, a lot more to go! Little victories :)

Friday, January 28, 2011

A special request

First of all, Carter's doing awesome. I will post more details soon, but for now, I have an urgent request. Tomorrow there will be a special drive to find possible matches for a friend who has leukemia and will eventually need a bone marrow transplant. So far, no match has been found. We don't know him personally but we know a lot of people that do. For obvious reasons, this is hitting close to home for us. All they need to do, is swab the inside of your cheek. 10 minutes of your time that could save a life! So please, if you have a few minutes tomorrow, I know it's short notice, but stop by.

The drive will be:
this Saturday, January 29 from 11 to 4
at the church building located at 10509 SE 5th St. Vancouver, WA 98664
donors need to be between the ages of 18 and 60

If you can't make it, that's understandable, but as you ask what you can do to help, one of the most practical answers we can give is that cancer patients world wide are always in need of blood and other donations. Carter wouldn't be having the success that he is currently having if it weren't for previous blood donors, as he's already had 4 transfusions this month. I've never been so grateful for all those blood drives that seem to always be happening!

Thank you all!

Tuesday, January 25, 2011

quick update

There was a moment when I thought we'd only be going to the hospital/clinic once this week. That dream was short-lived and our visits are now up to 3. We've got two down and one to go on Friday. Yesterday Carter just needed a dressing change on his arm. He was really brave! He still cried but not nearly as bad as usual. I was right by him telling him what they were doing and when they finished each step. That seemed to help a lot. He would ask, "are they done with the stickers now? Are they all done cleaning?" He's a control freak so it was nice for him to know exactly what was happening. Then today we went in for a pre-op appointment for the port placement next week. It was long and a lot of waiting for the amount of new information I received. Oh well. Carter did great because they didn't have to "poke him or take off his stickers and tape". So he was just happy as a clam.

To lighten the mood a little on this blog, here's a peak at a few fun things lately. We pretty much have to stay home and limit visitors to avoid exposure to germs and stuff. Last weekend, with Carter's counts looking pretty good, we finally felt good about taking him to the store as long as he stayed in the cart. He was really happy to be out of the house but not at the hospital. We found these cute pajamas for the boys on sale. I just can't get over how cute they are! The pajamas and the boys :)

You'll notice that Carter's face is a lot chubbier than usual. And his belly. That's the medicine's fault. And it probably won't last long. And Jude is scowling because we took a toy out of his hand for the picture. Next time we'll just let him hold the toy.

My awesome friend Kristi brought her dog over to play with the boys. Carter mostly liked watching him but Jude could not contain his excitement. Literally. We had to remind him countless times to calm down and be soft. It was pretty awesome. Carter's asked several times since then if we can go to Kristi's house and play with her dog :) It was a perfect break from the monotony of staying home and trying to entertain these kids.

My other awesome friend Becky (I have more than two awesome friends, these are just the two featured in today's post) made this hat for Carter. Isn't it so cute! His hair is starting to fall out. a little. We'll see how long it takes before he's Mr. Clean bald. But don't worry, we're stocking up on hats. He looks grumpy because he didn't want me to take his picture. I say if he doesn't want his picture taken, he should just stop looking so cute!

Until next time...

Friday, January 21, 2011

two more clinic visits

Carter and Grandma playing "memory" in the play room. That pole next to him has the 2 chemotherapy drugs that he gets every week. It only takes about 1/2 hour to do both of them.

We went to the clinic on Tuesday and Thursday of this week. Tuesday's visit was with yet another new doctor. I really liked him though and Carter did too. Although, he did call Vienna a "he" and Carter a "she". Dennison told him that he was 0 for 2 and we all had a good laugh. In his defense, Vienna was wearing blue and Carter's hair is pretty long and beautiful. Anyways, it was a pretty short visit. They just checked his blood counts and changed the dressing on his arm. His white blood cell count was 500 with an ANC of 0. Hemoglobin was 7.5 and platelets were 74,000. Low numbers, not low enough where he needed another transfusion though. Then we were stuck in traffic for about 45 minutes on the way home. Carter told us, "I'm having a hard time sitting here." He sounds so grown-up sometimes.

Thursday's visit went really well. I met with Carter's actual doctor, who I've only met once before while Carter was still inpatient. I really like him. We've suspected that Carter is in a higher risk category, although no one has come out a said that to us. Dennison mentioned to one doctor while we were still inpatient that he's seen online that the success rate of childhood leukemia was about 85%. The doctor then told him that in Carter's case, it was probably more like 75%. He didn't give an explanation and we didn't really think to ask why at the time. Anyways, I asked the doctor about that yesterday and we talked about it for a while. Children between the ages of 1 and 10 are the easiest to treat. Children younger than 1 or older than 10 are put into a higher risk category just because of their age. Kids with a white blood cell count at the time of diagnosis higher than 50,000 are also put into a higher risk category. Carter's was 130,000. Very high. They used to think that the higher the number, the longer the child had had the disease. They've discovered that that's not the case. It just means it's a more aggressive leukemia. Therefore, the treatment has to be more aggressive. So he gave me a new "roadmap" of what the next round is going to look like. It will be about two months long and should begin around the first weekend in Feb. There's a new medicine that he'll be getting that requires he have a high ANC before receiving it. If it's not high enough, we just have to wait for it to come up. So that could lengthen this round. The doctor also gave me an overview of what the whole treatment will look like, start to finish. It's really more like 3 1/2 years instead of 3 years like we thought. Our 3 year timer begins after this next round. For girls, it's only two years. It's kinda cool to see it all laid out like this. I thought it might be overwhelming but it's not that bad. Maybe because I don't know what everything means. Ignorance is bliss, right? :) His numbers looked a lot better than just two days prior. White blood cells count was 1500 with an ANC of 400. Hemoglobin was 7.6 and platelets were 94, quite a bit higher. So it looks like his bone marrow is getting cleaned out of the leukemia cells and there's starting to be room to produce normal healthy cells again. Yea! The doctor told me that since he's doing so well right now, I only have to bring him into clinic once next week! But then I remembered that he needs to have his arm dressing changed, so we'll have to go for a quick visit on Tuesday for that. Either next week or the week after, they'll be taking out his PICC line and putting a port in his chest instead. He'll have the port for the rest of his treatment, all three plus years of it. I'm really excited to get that thing out of his arm and be done with the once a week dressing changes that he HATES! But I'm nervous about the port since each time they "access" it (every time they draw blood or give medicine, etc.), they have to stick a needle in through his skin. Carter STILL asks me every time we go to the hospital if they're going to poke him. They've only poked him twice ever and it was a while ago. He's terrified of those pokes! Now it's going to happen fairly often. Not looking forward to that. What am I looking forward to, you ask? Being done with the "yucky medicine"!! Only another week!
Overall, Carter is doing really well. The majority of the time, he's his normal happy self. Sadly, I'd kinda forgotten about his happy side since he'd been so sick and grumpy for a while. He's such a fun kid! He's so brave and I'm so impressed with his strength every day. He's just awesome. And he LOVES his baby sister! He really likes when she grabs his finger:
He's a great big brother.
He wanted to go for a bike ride the week we got home from the hospital. We didn't get far because it was pretty cold. Now he likes to ride in the trailer behind Dennison's bike.

He's been helping us cook.

Did I mention that he is being spoiled rotten!? Cause he is. And we love it. Thanks to everyone for the many cards, letters, and gifts that have been sent his/our way. We can't thank you enough! We are just amazed at your generosity and love and support. Getting through this alone would be difficult, to say the least, so we are so thankful to have so many great friends and family.

Saturday, January 15, 2011

clinic visit 1/14

I took my mom with me to the clinic this last time. I knew that Carter would need to be sedated for a couple procedures and I wanted to have someone with me to hold the baby and just for moral support. Did I mention that my mom is amazing and has been here trying to keep us sane for a few weeks now? And will continue that mission for another couple weeks? Thank goodness for moms! Anyhow, Carter's blood counts are all up since last time because of the blood transfusion. White blood cell count is 2300 with ANC of 100, hemoglobin is 8.9 and platelets are 50,000. Lookin good. After the CBC (complete blood count) we waited with a super grumpy boy for the sedation team to be ready. He couldn't eat all morning and was very hungry and mean. They finally came to take us to the procedure room and one of the nursed tried to steal my baby. Not really, but she did hold her for a minute. I couldn't get to the hospital in time for the last sedation a few weeks ago so this was my first time. I was really nervous about it, I thought it would really freak me out. They told me I could hold him until he fell asleep so I got up on the bed with him on my lap while he cried, "I don't want to take a nap!" over and over again. As they were about to put the sleep-making stuff (I don't know what it's called) into his IV, the doctor decided it was a good idea to tell me that this medicine is the same stuff Michael Jackson took when he died. Perrrrrfect, just what I want to hear at this moment. He's not my favorite doctor. Luckily, I don't think we'll be scheduled with him again anytime soon. Anyways, it surprisingly didn't freak me out at all to hear that but the nurse did apologized for him later. So they injected the stuff and not 5 seconds later, Carter was out like a light. They helped me lay him down and then my mom and I went to wait in the play room. It took a little longer than normal because it's a teaching hospital and there was a resident in with them learning about the procedures. They did another LP (lumbar puncture) and a bone marrow aspirate. Once we were allowed back in the room, I had all of Carter's favorite snacks ready and had ordered his favorite lunch, chicken and french fries. It took a little while before he woke up but they were able to give all of his chemo through his IV while he was still sleeping. So once he was awake and ready, we could leave. BUT (there's always a but) the doctor wanted us to go down a get an x-ray of his knee since it has been bothering him so much. Carter was really nervous about it but it went really quickly and the x-rays were all totally normal. We just have to wait out the joint pain. Yesterday and today it's been a lot better though. He still limps a lot but is in a much better mood and doesn't tell me every 2 seconds that it hurts. In fact, I think I only heard it once all day today! Things are lookin up! I've noticed just how much my mood is tied to his. If he's happy, I'm happy. But if he's in pain, or sad, or just tired, I'm a total mess. I'm sure you can relate - as a parent, I think this is always the case. It just seems to be intensified by a billion.

This is weird. It's weird that our lives have changed so dramatically and so quickly and that everyone else's hasn't. Normal, everyday things are still happening all around us. It just seems so odd that the world kept on going when our world seemed to stop. And then start again and go really really really fast. Family takes on a whole new meaning. And I'm so grateful for mine. SO so grateful for my husband and two sweet boys and adorable little girl. Even if life is crazy chaos right now, we're going through it together and we have each other. And a few truckloads of friends and family who are just begging to help us :)

Wednesday, January 12, 2011

Another day at the clinic

We spent another full day at the clinic yesterday. We went in to get his blood counts and have a check-up with the doctor. When the nurse came in to get some blood out of his PICC line, it wasn't working. Then she told me she was afraid this would happen.... I guess when the guy changed the dressing on it last Friday, they tested it right after and were unable to get any blood return. The guy should've taken the dressing back off then and fixed it but he didn't, he just left. Granted, Carter's not the easiest patient to do a dressing change on, what with all the kicking and screaming, but still! So they had to call someone from the PICC team to come in yesterday and fix it. Carter was not a happy camper. But they got it fixed and were able to get it working again. His blood counts are still low, which is expected. White blood cell count is 1400 with an ANC count of 100. Hemoglobin was 7 and platelets were 29,000. Since those two numbers were pretty low, he received another blood transfusion yesterday. Every time they do a blood transfusion, they have to re-check his blood type and make sure he hasn't built up any anti-bodies from the other transfusions. Then they have to order the blood (that sounds so weird.... order blood?) from the blood bank and then we have to wait for it. That takes about an hour and half. Then the actual transfusion takes 3 hours. Then we have to wait another 30 minutes when it's finished to make sure that he doesn't have a reaction. That's a lot of time just sitting around. Good thing they have a tv. I think we're gonna need to invest in a portable dvd player, because if there's nothing satisfactory on tv, we're just out of luck. Anyways, after all that, we finally got to come back home. Carter was exhausted after the long day. At bed time, he kept telling Jude, "Be quiet so I can sleep!" I've never heard anything close to that escape his lips! He must've been very tired!
Usually after a blood transfusion, the energy level is up and they're feeling pretty good. I was excited for that today. Unfortunately, one of the side effects of his medicines is joint pain and he's feeling it something fierce in his knee. He spent most of the morning crying and trying to limp around. After that, he gave up on the walking and I've been carrying him around all day. About every ten minutes he informs me that his knee STILL hurts. I called the doctor to see if there's anything I can do for him and there's not. Poor little boy :( I wish so badly that I could take this away from him. It just breaks my heart to see him going through it all. He's such a brave boy and I've been so impressed with his maturity and strength. If any 3-year-old can do this, it's Carter.
In case you're wondering, here's how the treatment works. This first month, called "induction", the chemotherapy is supposed to kill all traces of cancerous cells in his blood. These leukemic cells grow quickly and start pushing out all the healthy cells. So once those cells are all gone, then there is room for new healthy cells to grow. So after this first month, he SHOULD be in a "remission" of sorts. But that's not the end of chemotherapy. Not even close. The rest of the treatment over the next 3 years is designed to "seek and destroy" any cancerous cells that still remain in the blood, bone marrow, spinal fluid, tissues, etc. I think I got all that right :) My brain is kinda overloaded with information so I might have left something out or got something a little wrong, but you get the general idea.

Monday, January 10, 2011

The weekend

This weekend was pretty uneventful, thank goodness! Sunday morning, I was all dressed and ready for church and I got Carter's medicine all ready for him. I went to give it to him, which is always scary for me because he cries and tries to get away and tells me repeatedly that he does NOT want to take his yucky medicine. But he took it, and not 30 seconds later, he threw up. So I cleaned that up then called his doctor to see if I needed to give him more medicine. Sure enough, I needed to give him his full dose all over again. Awesome. So I got it all ready again, took it over and gave it to him and he spit most of it out. Great. So I called the doctor again and she told me to just give him a break and try again in the evening. I've been mixing it was chocolate syrup and she suggested that I change it up and find something else to mix it with. By this time, I was more than 1/2 hour late for church so I put my pj's back on and got back in bed. That evening, I mixed his medicine with apple sauce instead and that seemed to go down a little easier. Other than that fiasco, it was a pretty calm and somewhat relaxing weekend. It was nice. Carter is still feeling pretty good. I think he'll be getting another blood transfusion tomorrow when we go to the clinic. That will help his energy level. And the amount of food this boy eats now is just hilarious. He's never been a big eater. Now, every 10 minutes he's telling me something else he wants to eat. I just have to laugh because it's so foreign to me to have a child that actually eats! Anyway, not much to update on, but I'm not complaining about that.

Saturday, January 8, 2011

The first clinic visit

check out the "goggles" Carter is watching tv through :)

We took Carter in for his first clinic visit yesterday. They first took his blood pressure, temperature, weight, height, etc. Then the nurse came in to take some blood. We got the blood counts back just a few minutes later. His white blood cell count is 500 with an ANC count (basically the "functional infection-fighting" white blood cells) of 0. Which is expected at this stage. The doctor told us that he's expecting us to call this weekend and tell him Carter has a fever. If that happens, we'll be readmitted to the hospital for at least two days. He's also expecting Carter to start getting mouth sores from the medicines and he gave me a special mouthwash for him to use. After getting checked out by the doctor, we went over to the "tv rooms" (I don't think that's the official name) so Carter could get his meds. First they gave him an anti-nausea medicine, followed by two chemotherapy drugs. After that, they had to change the dressing on his PCC line. The PCC line is in his arm and it's threaded up through a vein into a larger vein near his heart. It lasts for months but will soon be replaced with a "port". It's the same idea, but instead of coming out his arm, it's just under the skin in his chest. Kind of hard to explain, but he'll have that for the duration of his treatment which will be three years. Anyways, they have to change the dressing on his PCC line every week. HE HATES IT!!!! He has to be held down because once they take the old dressing off, it could easily be pulled out of his arm. Then they would have to sedate him to put a new one in. It takes about 3-5 minutes to complete the task and he cries the whole time and yells for them to "Let go of me! Stop doing that! I want you to stop! Leave me alone!" It's hard to be there for that. After that was done, we got to come back home. Next week, he'll probably need another blood transfusion. They're also going to do another bone marrow aspiration next week.
It's getting harder to know what to tell him about all this. He asked me several times yesterday, "So, do you think I'm not sick anymore?" Ugh. What do you say to your sweet 3 1/2 year old who has leukemia when he asks you something like that?!?! And how do you not break down crying right there?? But, I held myself together somehow and told him that he's mostly better but that part of his blood is still sick and so we'll have to keep giving him medicine and taking him to the doctor for a long time so he can get better. But you will get better.

I'm gonna miss this hair...

He likes to eat cheetos right after he takes his "yucky medicine" to get rid of the taste in his mouth. I think we'll be good on cheetos for a while :)

Thursday, January 6, 2011

The Homecoming!

We got to come home!!!!
Tuesday afternoon Carter spiked a fever again so they gave him more tylenol and he took a nap and then he felt much better. Dennison, Vienna, and I all stayed the night in the hospital on Tuesday night while Jude got to hang with his awesome grandparents. All day Wednesday Carter did really well. He loves riding their tricycle around and I can't even come close to keeping up with him. I take a short cut so I only go half the distance and I'm still too slow! We got the results of Carter's blood cultures that afternoon and there was no sign of infection. Yea! After that, we got our discharge papers and instructions of how to give his medicines at home and we were free to go. Carter wanted to stay at the hospital. I guess that says a lot about the doctors and nurses there.
This might sound weird since he's going through chemotherapy, but Carter seems much more like himself now than he has for months. I'm sure the three blood transfusions has a lot to do with it. You can tell he feels better and he's so happy all the time (except when he has to take his "yucky medicine"). The nurses and doctors even commented on how much he smiles and how much better he looks now than when he first came in. It's nice to know that he wasn't just turning into a grumpy kid. He had a very good reason for being so grumpy and I'm glad we found out so we can take care of it and help him feel better. And we know he won't always feel so good. He's going through a very intense treatment right now, but we're glad to see that things are progressing nicely. All his blood counts and levels are looking really good. When he was first admitted, his white blood cell count was 130,000 (normal is between 5,000 and 10,000). Chemotherapy works very fast..... when we left the hospital yesterday, his count was down to 1,100. So, as you can imagine, since the white blood cells are in charge of fighting off infection, his risk for getting an infection right now is very high since his count is so low. He will just have to stay home and we'll be keeping anyone sick far away. Hint hint, if you're sick, I won't let you in my front door :) Some other numbers, if you're interested are the hemoglobin and platelets. When he was first admitted, his hemoglobin was 4 (normal is between 12 and 16) and his platelet was 9,000 (normal is 150,000 to 300,000). When we left yesterday, his hemoglobin was up to 7.9 and his platelets were up to 44,000. He received two platelet transfusions (I don't know if that's the proper term) while in the hospital. So he's coming along and we're killing cancer cells everyday! He'll go back to the clinic tomorrow to have his blood checked again and get more IV chemo. So, aside from any unseen complications or issues (which are kind of expected this first intense month), we'll be going into the clinic twice a week for blood checks and chemo. I'm sure I've left out a ton of little bits of information and there's still a lot we don't know. But this is all I can think of right now.
I have to say it again, THANK YOU for everything! The dinners, the gifts, the prayers, it's all so appreciated. And our apologies for not responding to all the messages we've received, but we have received them and thank you for them. We feel so much love and support which makes this 3-year process ahead of us feel doable.

Packed up and ready to go home

Tuesday, January 4, 2011

A small step backwards

Carter slept a lot today, which was much needed. In the early afternoon, he threw up a few times and when the nurse came in to help us, she took his temperature. Almost 103. Bummer. Anytime someone going through chemotherapy gets a fever they are very careful about it. The risk of infection is so great and the complications that can come from an infection are pretty scary. Carter's immune system in seriously weak right now. Since this first round of chemo is so intense, his immune system will be at it's weakest point this week. Throughout treatment, it will fluctuate but this should be the lowest point it will reach. So, since a fever can be a sign of infection, they took some blood to do cultures and will keep him on the same antibiotic that he's been on until the blood cultures come back in 48 hours. The original plan of coming home today has been changed but that's ok. I'm glad it happened when it did instead of right before we were planning on leaving or, worse still, right after we got home. The nurses and doctors were not surprised that he got this fever and they told us it's completely expected. But, they still have to be very careful about it. After they took blood for his cultures, they were able to give him some tylenol. He went back to sleep and when he woke up, he was ready to go play again. When I left the hospital last night, he had just completed about 25 laps around the unit on the tricycle (with an exhausted father trying to keep up) and was back in the play room painting. Hopefully the fever will stay down and we can leave tomorrow.
Today he will get another chemotherapy drug which has to be given as a shot in the leg. I'm not looking forward to that. But he's being so brave through all of this. There's one medicine that he has to take twice a day every day for the first 29 days. It's an oral medicine and it tastes really bad. I think it was yesterday, or maybe the day before (all the days are running together in my head) he tried to give it to himself (it's just in a little syringe) but ended up spitting it out. So we had to give it to him again and he was fighting us but he swallowed it. When it was time for his next dose, he wanted to do it himself again but Dennison reminded him of when he did it himself and spit it out. He told Dennison, "oh yeah, maybe you should do it." So he did and Carter was so brave about it. The next dose, we let him do it himself and he just did it fast and then hurried and took his other medicine that tastes better. We were so proud of him! He hates taking that medicine but he just does it. What an amazing little boy we have. So now he takes his medicines by himself. So brave. We just love Carter so much.

Sunday, January 2, 2011

The third day

First of all, I need to say thank you, thank you, thank you! The outpouring of love and support is overwhelming and so appreciated. Words can't describe the gratitude we feel for all the prayers and offers of food, babysitting, and anything else we might need. We are stronger because of you. Thank you!

Today was a good day at the hospital. We met another doctor that will be working with Carter and we really like him. After talking with him, we both feel pretty good. We know it will be a long hard road ahead but we're feeling confident. Tomorrow we will be talking in more detail about the different chemotherapy drugs he's on and how to take care of him once he comes home.
Carter is responding to the chemotherapy just as they would expect. He's very active and enjoying his time at the hospital. He's loving all the attention and play time. He never wants to be in his room, he wants to wander the halls and hang out in the play room. He has discovered the awesomeness of Dumbo and now wants to watch it whenever he has to be in his room. He also has loved going for walks or "rides" as he calls them (pictured above).

He fell asleep sitting up and eating cheetos. He's seriously cute. Other than that, there's not much to update you on today. We're still waiting for the results from the bone marrow and spinal fluid tests. I'm sure there will be more updates soon, but for now, it was nice to have a fun day at the hospital with our little man. Jude got to go see his brother last night. He loved playing in the toy room.Again, thank you all for the kind words, prayers, love, support, food, everything. We are surrounded by amazing friends and family and are so grateful for all this help and support.

Saturday, January 1, 2011

The official Diagnosis

Well, although I still don't know a lot, I now know much more about leukemia than I ever wanted to. Most of Carter's initial test have come back and the team of doctors working on him have made their official diagnosis: Acute lymphoblastic leukemia (ALL). This is the most common type of leukemia in young children. So now that the doctors have a pretty good idea what they're dealing with, the treatment has begun. Yesterday he received two blood transfusions, was put under anesthesia for a lumbar puncture to check if there's any cancer in his brain or spinal cord, a bone marrow biopsy and a more permanent IV line was put in place (a PCC) which he will still have in when he comes home (hopefully middle of next week). At the time of the lumbar puncture, they also gave him his first dose of chemotherapy in his spinal fluid. This morning, he officially begins his first round of chemotherapy. Last night, the doctors came in and explained the five different drugs used for chemotherapy which he will be receiving and all their side effects. One of the medicines in particular has some pretty intense side effects and this is the one he gets twice a day for 29 days. We will be in charge of giving him this one at home. It can dramatically change his personality and eating habits. His immune system will be very weak.
On a happier note, they have a great play room just down the hall from Carter's room. We've been having a lot of fun playing games and painting with him in there. His spirits are high right now and he's melting our hearts. He is such a sweet boy and is being a real trooper through all the poking and prodding that's been going on. Dennison has this on video on his phone but we can't figure out how to upload it right now, but yesterday, the nurse came in a did something with a machine but didn't touch or even talk to Carter before she left again. Carter looked at Dennison (I was home with Vienna at the time) and said, "she didn't even do anything to me!" Then Dennison got out his phone and was recording him and said, "remember when that nurse came in a she didn't do anything to you?" to which Carter said, "Yeah, maybe I'm not sick anymore!" If that doesn't tear your heart apart, I don't know what will.
Dennison has been at the hospital with him constantly. He's such an incredible father and there has always been a special bond between him and Carter. I've been trying to figure out where my time is best spent. The night we got the call from the doctor, our dear friends were over hanging out with us. They took Jude home with them that night and he's been staying with them ever since. I will be picking him up very soon, I miss that little guy! So my days so far have been spent at the hospital with Vienna and then we drive home at night since there's not much sleeping space in Carter's room. My parents will be here this afternoon and I'm excited to take Jude to see his brother. It's really difficult because I want to be at the hospital every second but I still have two other children to take care of. And I know Dennison has things under control there. It feels like no matter where I am, I'm feeling a little guilty for not being somewhere else. But I try to remind myself that I cannot be in two places at once, so just take it an hour at a time and throw myself into whatever task is at hand.
Thank you for all your thoughts and prayers and kind words. We feel the love and support from you all and really appreciate it.