When Carter was diagnosed nearly two weeks ago (seems like it's been SOOO much longer than that but also feels like it was just yesterday) his oncologist asked if I stayed home with the kids. I told her yes but that I did some photography on the side for fun. She mentioned a company to me that donates their time (and digital images) to children with cancer. They do photo shoots of the child with cancer and one or two pictures of the family or the child with the siblings. I INSTANTLY knew I wanted to be involved. I have emailed the company and am waiting to hear back. This is something I would seriously love to take part in. It's something I would have wanted to be involved in whether Carter had gotten leukemia or not. I love being involved in charity type of things and providing a service that maybe not everyone can provide and give something to a family in need that may not be able to afford it otherwise. I like to think of myself as a "pay it forward" kind of person. (I'm sure I have more than my fair share of "selfish" moments... I should work on that!) So, hopefully at some point when we get Carter into the maintenance phase of his chemotherapy (in 6 months) I can start serving like that. We'll see if this company accepts me. If not, then I'll just try to do it on my own. I'm sure I can give the oncologist my cards and she can pass it along to people who would be interested.
Beads of Courage~ Colorado Springs Cancer Photographer
One of my favorite things about Carter having Leukemia (if there is such a thing as "favorite things") is the Beads of Courage program. For every little mile stone Carter overcomes he gets a bead. I know it doesn't sound like much but it's actually pretty cool. Each specific color/shape of a bead means something. For example, for each time they draw blood he gets a black bead. For each day he spends in the hospital he gets a yellow one. Surgery they get a cool star shaped one (of which Carter will have THREE by the time he's one month into this thing). Chemo is a white bead. When the Child Life Specialist comes he gets one with a smiley face. He also has beads that spell his name and one that has the hospital's name on it with "Beads of Courage" on the other side. As of right now Carter has over 70 beads- yep, he's been through a lot in the last week and a half. He will continue to get beads over the next three years from the clinic each time he has chemo or anything like that. I really like the program and love their explanation as to WHY they chose beads for this program. Carter looks forward to receiving beads as well. Yesterday he earned 9 beads for the following things: surgery, getting his port removed, being neutropenic, spending a day at the hospital, being in isolation, getting a spinal tap, chemo, having blood drawn, and receiving platelets.
As for how Carter's doing, he's doing great. Aside from the whole bacteria infection (which they caught immediately and they kicked that within days) and his yeast flare up, we can't complain. Because of the yeast, the surgeon had to remove his port. Bummer. Once yeast are in a port there's no getting them out so the port had to be removed and he had to get a normal IV. This also means that any time he needs blood drawn for the remainder of the time we are at the hospital (until hopefully only Friday afternoon) they will need to poke him (he earns a bead!)... not Carter's favorite past time. Once we have three yeast-free blood cultures (which SHOULD be on Friday, they will take out the IV, put in a PICC line (another bead!), and send us on our way. After a few weeks once Carter's body has had time to heal up a little, we'll come back to the hospital and he'll get another port in (more beads!).... a nice, clean, yeast-free port that should be in there for the remainder of his treatment.
This has been a tough little journey so far and I've been encouraged to talk to others who have been through this. At this point, I just need to deal with what's in front of me. Every case of A.L.L. is different and every child that has it reacts differently to the meds, chemo, steroids, etc. I know I should reach out for answers from other moms... but I know it will just scare me. Right now, ignorance is truly bliss for me. I don't google Leukemia. I don't call those mom's people have told me about. I haven't talked to the other mothers in the hospital with children with cancer. I just want to be. You know? I want to go through this with Bryan, Carter, and my cute healthy little girls. I have always loved my family but I would be a liar if I said I wasn't a little more patient these days.... if I didn't let Addi stay up a little late and watch Ariel with me while snuggling on the couch... if I didn't drive through places to get the girls a shake a little more often. I have a new appreciation for my sweet family, and I feel like I'm a mommy who has always appreciated them; one who truly loves to be a stay-at-home mom; one who tries to remember "these days will be gone before you know it" when they are driving me batty and throwing tantrums for no apparent reason. I love my family and I am the luckiest girl in the world to have them with me forever and ever.
The Surgery ~March 13, 2011 ~Colorado Springs Cancer Photographer
Last Sunday Carter had to have surgery. Because his road to recovery is going to be such a long one filled with so many "pokes", with Leukemia, they put a port in your chest. (I know they do this with other kinds of cancers as well.) A port is basically a circle about the size of a 1/2 dollar and about a 1/4 inch or so thick with an IV tube running out one side. They put it under Carter's skin in his chest and ran the IV to his heart. From that point forward they will always run his Chemo, his transfusions, his meds through this port. It's MUCH easier. They don't have to poke him nearly as much and while we are here in the hospital they just have it permanently accessed so there is NO MORE POKING!!! YEAH!!!
While they had him under the knife they did a spinal tap to see if there was cancer in his spine. (There wasn't. Phew!) I wish I could say that was going to be his only spinal over the next 3 years but... When I asked the oncologist how many spinal taps he would received she sighed and said "I can't begin to count..." Bummer. But normally it will be in the clinic and he'll just be drugged and not all the way under. They also did a bone marrow biopsy. As they suspected, nearly everything in the bone marrow was cancer infested. That should change. Frankly, it's probably already changed. The doctor said if we looked again today the bone marrow would be pretty much empty. Strange, huh? The doctors that did his surgery were AWESOME. They joked with him and teased him while prepping him. He kept telling the anesthesiologist that he wasn't going to fall asleep. When they went back to the actual surgery and the doctor told him to count down from 10 and then he would fall asleep. He said, "No I won't! 10,9,8,7,6,5,4,3,2,1! (as fast as he could) See? I'm not asleep!" So the doctor said, "Well, Carter, you can't count that fast. Try counting down from 100." Carter: "100?! That's gunna take forever! I'm not going to fall asleep!" And then he passed out. One thing I was very happy about is that they let Bryan go back with him until he fell asleep. One thing Carter was happy about is that he got to ride down the hallway and in an elevator in his bed. He seriously thought it was the coolest thing ever. The surgery went off without a hitch and it was short and sweet. And Carter took it like a champ.
Passing the Time~ Colorado Springs Cancer Photographer
The hospital is awesome. Seriously, there's tons to do here, considering. There are so many board games to play, Wii's to borrow, nurses to talk to, iPads to play, DS's to play, books to read, legos to build, play dough to make with the Child Life specialist.... all kinds of things. It's been so much fun spending so much quality time with Carter. Don't get me wrong, I wish it was under different circumstances, but it is what it is, so we deal with it and move forward.
That being said, I have my breakdowns. I really try to stay positive. As my dear grandmother always say, "The power of positive thinking!" You have no idea how many times I have said that in my head the past week. I am trying my hardest to stay positive. When I'm with Carter, it's easy. He's doing really well. Tons of energy and spunk; has more questions than anyone I know.... it's when I'm at home laying in bed. When it's Bryan's turn to sleep at the hospital. Or when I'm taking a shower. When things are nice and quiet my brain starts to go to the uncharted world of the "What if's"... It's a DANGEROUS place and one I try to spend as little time in as possible.
A close friend of mine from Arizona (and one I will eternally love and look up to) sent me a wonderful email. She referred me to a scripture from the New Testament. John 14:18. It says "I will not leave you comfortless: I will come to you." How wonderful is that scripture? The scriptures are amazing and Bryan and I read them daily. But every now and then when you read one that you TRULY feel is written for you and your family, they seem to come to life. I know I will read and reread that scripture over the next 3 years. I know our Father in Heaven will not leave us. He loves us as much as (probably even more) than we love our little ones. That is something Bryan and I never forget. We know that whatever happens IS for a reason; a reason much more long term that we realize. But we know Carter will be ok. He'll pull through this like a champ and be a much stronger person in the end for it.
Leukemia ~Colorado Springs Cancer Photographer
Carter is our oldest son (and only son, actually), a sweet 5 1/2 year old boy. A few weeks ago, we noticed that Carter was getting tired really easily and was starting to look pale (which is really saying something since his complexion is normally already very Casper-the-Friendly-Ghost like). He was also complaining of stomach aches and random pains in different parts of his body. His doctor thought that they might be Abdominal Migraines(we hadn't ever heard of them either) and started him on some medication. The medication (at least we thought it was the meds) were making him even MORE tired. It was ridiculous. His teacher talked to me about how he was always so sluggish, he was falling asleep at his friends houses (SO unlike him), he couldn't wait for bed time, he wouldn't join in on my dance parties with the kids... things like that. His doctor asked to see him immediately, gave him an exam (a quite thorough one) and ordered some tests. During the exam he was asking us some very random questions ("Has he been waking up in the middle of the night?" Ummm... a little bit which IS strange for him. "Have his lips been fuller than normal?" Actually, yes. I had even commented to Bryan about that.) The doctor, who we just adore, assured us it was more than likely anemia and nothing more. While examining Carter he had spent WAY too long feeling around his arm pits. Of course the first thing we think is "lumps". I asked him why he was lingering there and he said he felt some VERY small masses. They were small and kinda squishy so they were more than likely nothing. He said if he wasn't looking for them specifically he wouldn't even have felt them. But he did have some reason for concern so he ordered tons of tests. We, of course, worried of the worst case scenario. After a lot of time waiting (it was only 6 or so hours but that's a LONG time when you're scared) we had to take Carter to get MORE blood drawn. By this point it was 4 in the afternoon and we were very worried we would have to wait through the weekend to find out what was going on since the pediatrician closed at 5. We were worried it was something serious... you know, like mono or pneumonia. (If only!!) Dr Kim (the ped) called a little after 5:00 and said he should know within the hour what the results were but that they had crossed off bone cancer and liver problems. That's good, but scary they were looking at things so serious. He had given the lab his cell phone number and had my number in his phone. About 6:30 the doctor texted me and said the lab was rechecking something but he should know within the next 30 minutes or so. I, once again, started to cry. Why on earth would they need to recheck normal lab results. Obviously something wasn't right. He finally called me a VERY long hour later (while Bryan was at Costco of course) with the news. He was 98% sure. He was SO sweet while talking to me. (What a HORRIBLE call to give!) He had been on the phone with the oncologist (whom he kept calling the hematologist- she's both- I think as to not further scare me) and with the hospitals all over Colorado Springs trying to find a bed. He sent us immediately to the closest one with an open bed and told us to cancel our trip to California next week. He then asked me if I was religious and prayed with me over the phone. It made me love that doctor that much more. (He had BIG shoes to fill after my super awesome doctor in AZ.) The fact that he didn't care if it was breaking doctor rules was so great to me. He just wanted to comfort a crying mother who had just received some very heartbreaking news.
After being a human pin-cushion over the next 24 hours, Carter was officially diagnosed with leukemia, specifically pre-B cell Acute Lymphoniblastic Leukemia. (A.L.L.) Of all the kinds of cancers, this is the "best" one. We were obviously devastated, as all of the worst-case scenarios flooded our minds. It was the beginning of a very scary journey. Thanks to some wonderful doctors and nurses, our minds were put a little at ease as they informed us that of all the types of leukemias, Carter has the most treatable and curable form. They taught us that leukemia, unlike solid cancers, is cancer of the blood. That means it is everywhere almost immediately (they think he's only had it two weeks or so), which makes early diagnosing and treatment very important. Carter's bone marrow, which usually makes all of his blood cells, was malfunctioning and only creating a type of white blood cell, B-cell, at a very rapid rate. So rapid in fact, that those types of cells took over the blood producing marrow and Carter was unable to produce oxygen carrying red blood cells, platelets that help with clotting, infection fighting white blood cells, etc. After a few platelet and blood transfusions, (and a formal diagnosing) Carter was taken to surgery where he was given a spinal tap, had a bone marrow biopsy (NOT transplant) from his little hip, and had a port placed in the left upper part of his chest, that will remain there for easy chemo treatments for the next few (2-3) years. This is the point we are at now. (It is SO strange to think that a little over 48 hours ago our lives were 100% different. 48 hours ago I couldn't even spell leukemia.-- although I bet Bryan could. He's quite the smarty pants.) The chemotherapy should begin to work immediately, and in the next week most of the cancer cells should be dead or dying. However, because leukemia goes wherever there is blood, which is just about every square millimeter of your body, it is very difficult to get rid of it completely without lengthy chemo treatments. So, the next 6 months will be a very intensive chemo regimen (during which Carter will lose his hair- hat time!!) followed by 2-3 years of maintenance chemotherapy. He will start losing his hair in a few weeks and be pretty darn miserable for the next 6 months. (And we hear we will too with the steroids they will be giving him. Turns him into a major crank, I guess.) But, obviously this will all be worth it to have our healthy little boy back. It's strange to think that when he finally gets this port out of his body he will be preparing to be baptized... that seems SO far away. Carter has been a real trooper. Aside from a few rough hours after surgery, he's been in good spirits and has been soaking up all the cute nurses and TONS of attention he's getting. He has borrowed a DS, watched movies on the iPad, watched Star Wars with Daddy late at night, gotten shakes, cookies, treats (as well as healthy food), and played countless games with Mom or Dad- one of which is always with him. This has obviously not been a fun experience for him, and will only get worse before it gets better, but he has had a pretty good attitude through it all, at least for a 5 year old with cancer. :) We are so blessed to have in our family. We know that this will be a learning experience for us all, and that we will grow closer as a family and closer to our Savior and Father in Heaven through this. We are absolutely amazed and blown away by the amount of support, prayers, thoughts, and fasting we have received the past two days. Our inboxes are literally busting at the seams. Our prayers are FULL of things to be thankful for. We are SO grateful my girls and Bryan and I are healthy. We are so grateful Carter is getting the help he needs. We are SO grateful for those kind souls that donate blood and platelets. We are so thankful for modern medicine. If this was 40 years ago there would have been NO hope. We are so grateful for perfect strangers that are praying and fasting for a little 5 year old boy they have never and more than likely will never meet. We are grateful for facebook! The word spread so fast through facebook which allowed so many more people to keep our little fighter in their prayers. We have definitely asked the question "Why?" through this. But not with anger. We wonder why the Lord has given us this challenge. What are we suppose to learn here? How are we suppose to grow in order to learn what the Lord wants us to learn. One thing we know for sure is that the Lord will NOT give us something we cannot handle. We are going to kick the crap out of this cancer! A few weeks ago I was listening to an old friend tell me about her 5 year old nephew with cancer. I said to her, "I don't know how your brother and sister-in-law do it. That would literally kill me... watching my 5 year old suffer through cancer." (should have knocked on wood, I guess.) But, with the Lord's help, all is possible.
Things I never thought I would say that have come out of my mouth over the last 48 hours: ~I hope it's just pneumonia. ~My son has cancer? ~I'm so glad it's just Leukemia. ~This could be SO much worse. ~Let's dye Carter's hair blue!! It's gunna fall out anyways. (**He wants green**) ~MAKE A WISH!?!? We get to apply for that? AWESOME! ~Do you think if we took Carter to Disneyland while he's still bald that they'll let us cut in front of everyone on all the lines? We should really look into that. ~"Hey Bryan, did you ever think we would spend our 8 year anniversary in the hospital room of our little boy with Cancer?" His response "Yep. I've been imagining this day since I was a little boy." (goofball) ~Man, having a kid with cancer really helps me take off those last few pounds. (Lost 3 already.) ~Our child WILL be a cancer survivor. Thank you everyone, once again, for the countless prayers. We can say without a shadow of a doubt, the prayers are the reason we are getting by. Our testimonies have only grown (not as fast as the cancer, but pretty darn fast!) and our Savior is near by. This is one of those times that He is carrying us, and we truly appreciate it. Our Father in Heaven loves our Carter as much as we do... and we will never ever doubt that. Hug your babies a little longer today; life changes quickly.
Castlewood Canyon~ Colorado Springs Children Photographer
One thing I love about Colorado are all the national parks. I know Arizona has them and so does California but I decided when we moved here that we need to get out more. The kids are finally getting to the ages that they can go and play. Together. And have fun. Together. With us. It's pretty much awesome. We still have nap for the wee one but until then it's party time. So, off we went last month to a great national park, Castlewood Canyon. It was really fun. Preslee REFUSED to sit in the stroller (shocking) and would N.O.T. stay out of the snow (again, shocking). The other two were whining 30 minutes into our walk (on pavement... not like it was a real hike) so THEY ended up in the stroller while we chased P around. But, still, super fun. I love my family so so much. They are the best in the whole world. I can't imagine more adorable kids or a more stellar husband. We all have so much fun together and I can't believe I get to be with all these goofballs for eternity.
Little Miss "Into Everything"~ Colorado Springs Children Photographer
First of all, I ADORE this child. I mean, I love her head to toe, inside and out. She has a zest for life unlike any other child I've met. BUT... (saw that coming, huh?) she reminds me a touch of the Tasmanian Devil. She is literally into everything. EV. ERY. THING. If she can reach it, she opens it. If there's something in it, she takes it out. If she can climb on it, she does. And to her, it's completely funny. Always. *sigh*. I fear Bryan and I have our work cut out for us with this one....