I've been meaning to do this for some time now, but I've finally put together the story of Catie's fight with cancer. The first few entries were taken from emails to family and the rest are updates either Catie or I posted to a website maintained by Catie's brother for family and friends.
It's been nearly six months since the funeral yet memories of Catie continue to bless our family. The kids talk about her every day and each night write the day's events in their journals so they'll remember what to tell her when they see her again in heaven. We miss her greatly but are comforted in knowing she will always be a part of our lives.
- Steve
Here are the entries by date and with the author in parentheses:
August 1, 2007 (Steve)
A few weeks ago, Catie went to her doctor because of pain and swelling her shoulder. A shoulder x-ray indicated a tumor. We were referred to the Duke Cancer Clinic where they told us it was likely some type of cancer, but they could not be sure until the biopsy results came in.
Earlier today we found out that Catie has a rare and serious type of bone cancer called Ewing’s sarcoma. We don’t know yet how much it has spread, but she’ll be thoroughly tested on Thursday. She’ll also begin three months of chemotherapy right away, followed by radiation therapy and/or surgery to remove her clavicle, then more chemotherapy. We don’t know yet what options we will have for the baby, but I think that’s something we’ll discuss on Thursday.
Our biggest concern now is whether it has spread beyond her shoulder. The treatment success rates are much higher if it is localized. So far, they have confined x-rays/MRI to the shoulder to avoid putting the baby at risk. They’ve also held off on a CT scan, which apparently is more dangerous. But now that we know what she has and how serious it is, the doctors are planning to test her thoroughly tomorrow. We are scheduled to be over at the hospital the entire day.
So we have a long road ahead of us and there are no guarantees the treatment will be successful. We appreciate your prayers and believe that prayer will help us through this.
August 6, 2007 (Steve)
Catie is going to start 7 months of chemotherapy this week. Because Ewing’s sarcoma normally affects children, Catie will be treated at Duke Children’s Hospital. For her treatment, she will be in the hospital for 3 to 5 days at a time. She’ll check in for chemotherapy every 2 weeks—stay in the hospital 3-5 days, then stay at home 9-11 days, then return to the hospital 3-5 days, and so on for 7 months. The doctors will be monitoring the tumor and will decide when to surgically remove her clavicle and part of her scapula over the next few weeks. They might also use radiation therapy.
Chemotherapy does pose a risk for the baby, but we don’t want to delay treatment because if the cancer does spread, the chances it can be cured drop from about 75% down to about 20%. The baby is not quite 5 months along, so it is still too early to deliver. We are working with experts in maternal-fetal medicine and neonatology at Duke, and we’ve decided to go forward with the chemotherapy, monitoring the baby, and then deliver the baby when the time is right after weighing the risks of exposure to chemotherapy versus the risks of premature birth. They definitely want to deliver the baby before surgery or radiation therapy, so that is another consideration in the timing of treatments.
August 14, 2007 (Steve)
Catie’s first chemotherapy treatment was on Thursday and Friday. The next couple days she was very tired but otherwise doing great. She did not have any nausea and her blood counts indicate that her immune system is still strong, which is a major concern during chemotherapy. She has several check-ups scheduled over the next week and a half, then she will return to the hospital for her next treatment on August 23—this time for 5 days.
The doctors want to deliver the baby in less than 6 weeks, when she is about 6 1/2 months (29 weeks) along. That could change, but right now it seems to best balance the risks of premature birth vs. the risks of exposure to chemotherapy. There is almost no evidence on pregnant women undergoing this particular chemotherapy regimen, but the risks to the baby appear to be significantly lower after the first trimester. So we are hopeful that everything will be okay. After Catie has a couple weeks to recover from the birth, the doctors plan to remove the tumor surgically. They will also have to remove most of her clavicle, some of her scapula, and some tendons, etc., in the shoulder area. Depending on the progress up to that point, they might also use radiation therapy on her shoulder.
The doctors have conducted MRIs, CT scans, two biopsies, and a bone scan to determine the size of the tumor and whether it has spread anywhere else in her body. Unfortunately, they found a second tumor in her skull near her left eye. This does not affect her chemotherapy treatment plan, but they will most likely have to use radiation therapy at that site after the baby is delivered. Because of the location near her eye, surgery probably will not be an option. We continue to pray that the tumor will not spread any further and that it will respond to the chemotherapy.
September 3, 2007 (Steve)
Catie finished her second treatment last Monday night, and she returns for her third treatment this Thursday. So far, everything seems to be going as well as we could have hoped. She has been feeling pretty good during and between treatments, except she is consistently feeling weak and tired and has been taking things easy. However, she has not felt many of the side effects that others do. The one side effect she couldn’t escape was losing her hair, and she finally broke down and let me cut it last week. She looks great with short patchy hair.
In a few weeks the doctors will re-run some tests (MRI, bone scan, etc.), which will give us an indication of how responsive the cancer is to her treatment. We’re doing everything we can from our end—prayer, healthy diet, exercise (walking), rest, and laughter. Because of that and all your prayers, we’re expecting good news.
We’re having the baby checked out at least weekly, and so far everything looks good. Because of that, they’re now thinking about waiting a couple more weeks before delivering her. So now we’re expecting the baby in early to mid October (at 31 or 33 weeks).
September 10, 2007 (Steve)
Catie spent Thursday and Friday in the hospital and the past two days resting at home. As far as we can tell, the visit was successful, and she has still managed to avoid the severe side effects associated with chemotherapy. We are so grateful for that.
It was a fairly uneventful visit, except at some point during the middle of the night the nurses realized that despite all the fluids going into Catie (mostly saline but also some chemotherapy drugs), none were coming out. They brought in a scale and she was 11 pounds heavier than she was just a few hours earlier. Then they gave her a diuretic and soon everything was back to normal. Although the baby is growing and gaining weight, Catie weighs now the same as she did before the pregnancy. I guess she was trying to catch up overnight.
The doctors are saying now that they’ll give Catie two (or possibly one) more treatments, then deliver the baby as soon as her blood counts recover. So, she’ll tentatively have chemo on Sep. 20, Oct. 4, and then deliver the baby sometime between Oct. 8 and Oct. 18. Unless she has to have a C-section (which we don’t want, but right now the baby is still head up), she’ll continue with her usual chemotherapy schedule (Oct. 18). We’ll know more about the surgery and radiation therapy in the coming weeks.
As you might guess, the doctors and nurses love Catie. This week one nurse called her the “star of the cancer ward” and another pulled strings to get Catie re-assigned to her from another nurse. She is really been in good spirits throughout her treatment.
A couple funny stories... the kids have really been close with Catie the past few weeks. David has been telling her often how pretty she looks and neither really seemed to notice (or at least say anything about) her hair falling out. Yesterday Catie stayed home from church to sleep more, and before we left David asked her if she’s staying home “because the people at church won’t like her because she doesn’t have any hair.” We had a little talk after that. And yesterday morning Mary saw Catie taking her pre-natal vitamin and asked for one. David quickly intervened, saying “no Mary, that vitamin makes your hair fall out.”
September 19, 2007 (Steve)
Catie had the week off from treatment, but she’s checking back in tomorrow (Thursday) for a five-day stay. We are really happy with how things have gone so far, considering the situation. Last Thursday and Friday we had some extensive tests done on the baby, and everything looks good. Aside from being a little small for her age (10th percentile), there are no signs of trouble in her heart or anywhere else. So, we have tentatively scheduled Monday, October 22 for the birth.
Catie continues to be very touched by all the mail she has been receiving. Thank you all so much for that. She is overwhelmed by the outpouring of love she has received.
David’s birthday is on Sunday, but we are going to celebrate tonight before Catie goes back to the hospital. For the past six months, he’s been asking for a Cars flashlight, a bell for his bike, and a chocolate cake. I think we can handle that. The kids mean so much to Catie, and she has really been looking forward to David’s party.
This has been a slow (which is good) week, but we’ll probably have more news next Tuesday or Wednesday after we get back from the hospital.
September 25, 2007 (Steve)
Catie returned from the hospital Monday night after a five-day stay. It is hard for her to be away from home and away from the kids, so she’s very happy to be back (and we’re even happier to have her back).
Catie continues to feel fairly well during her treatments, despite the toxins they are injecting into her. We laugh sometimes at all the precautions the pharmacists and nurses take when handling sealed IV bags, when Catie gets it injected directly into her bloodstream. They say some of the chemotherapy will burn right through her skin if it dripped on her; I don’t know what it is doing on the inside, but it seems to be working.
The doctors were a little concerned about Catie’s red blood cell count on Saturday, so they gave her a blood transfusion. A low red blood cell count indicates that less oxygen is being carried throughout her body, which could cause fatigue and other problems. Catie seemed fine, but they were more worried about the baby. Her counts were back up by Sunday.
The other concern has been low amniotic fluid. I don’t actually know what these numbers measure (drops? gallons? inches? mL?), but apparently 14-15 is normal 29 weeks into a pregnancy, and 9 is low. Catie’s has been declining the past week or so and dropped to 4 during her treatment. She’s supposed to rest and drink a lot, but if it doesn’t increase by Thursday they will probably deliver the baby then. Unfortunately, given the baby’s current position, the delivery will likely be by C-section which means longer recovery time and a longer delay in her treatment (4-5 weeks instead of a few days). With things going so well we don’t want to stop the treatment, but we may not have a choice. With low amniotic fluid, it is less likely the baby will turn—especially in the next day or two. We’re praying for a back flip (or any kind of flip) or more fluid to buy some time.
We’ve been told that regardless of when the baby is born (this week, mid-October, or sometime in between), she’ll most likely have to stay in the NICU at least through the beginning of December. We took a tour of the NICU at Duke Monday afternoon, and the reality of the next couple months started to sink in. We got to see a couple babies that were about 29 weeks old—they were so tiny. I’m sure it will be especially hard for Catie not to be able to spend all day with the baby or take her home, but she’ll be staying just a few floors away from where Catie gets her treatment.
September 29, 2007 (Steve)
Our new daughter Sarah Grace Stubben was born Thursday, September 27, at 7:12 pm. She weighed 2 lbs 4 oz.
Her expected due date was December 6, but apparently mom’s chemotherapy was too much for her and we couldn’t wait any longer. The doctors had some concerns about the baby and decided it would be dangerous to keep her inside any longer. The amniotic fluid level had worsened, and the blood flow through the umbilical cord appeared to be restricted. They also noted some apparent stress on the baby’s heart.
They took Catie straight over to labor and delivery to start getting prepped for surgery. She was a little nervous but handled it very well. I was able to see Sarah as she was born and just afterward, and we both visited her around 5am the next morning.
Catie is feeling well and will return home Sunday morning. Sarah is also doing well in the NICU. Her white blood cell count was low, probably due to the chemotherapy, but has started to increase. She initially had some help breathing (CPAP) but is now breathing on her own.
October 1, 2007 (Steve)
After three days, Sarah seems to be doing as well as can be expected for a baby delivered at 30 weeks. She’s tolerating small amounts of milk, slowly gaining weight, dirtying diapers, and breathing on her own. Sarah will likely have to stay in the NICU at Duke at least through early December, but we are looking forward to every visit. We were able to hold her for the first time this morning, which was wonderful.
Catie came home this afternoon and is happy to be back—between her last treatment and the birth, she’s spent 9 of the last 11 days in the hospital. Her chemotherapy seems to be going well. She has the next month off to recover from the C-section and shoulder surgery (to remove the tumor), which will probably take place in the next week or two. The plan is to resume chemotherapy in 4 or 5 weeks and continue for another 5 months.
We fell very blessed that mom and baby are doing well.
October 3, 2007 (Steve)
Catie returned home Sunday and was able to rest the past three days. Tomorrow (Thursday), it’s back to work. We’re going to be at the hospital from 11am to around 10pm for three tests, a blood test, and two visits. At 11am she’s having her blood tested. She routinely has blood drawn every Monday and Thursday (when she’s not in for treatment) to test her white blood cell, red blood cell, and platelet counts. The results determine whether I have to continue giving Catie her daily injections of Neupogen to stimulate white blood cell production (I like giving the injections more than Catie likes receiving them, so sometimes I’m disappointed when her counts are up). Afterward, we’re meeting with Catie’s oncologist for a check up and to discuss the treatment going forward. At 1:30, Catie will be injected with a radioactive dye in preparation for the bone scan. Then we run over to the other side of the hospital to meet with the surgeon who will be removing the tumor in Catie’s shoulder. That surgery is scheduled for this Monday (we just found out this morning), and we still have lots of questions for him. At 3:30pm we’ll be back for the bone scan. Ewing’s Sarcoma tumors spread primarily to the lungs or other bones. The initial bone scan indicated hot spots on her right shoulder (we already knew about that one) and near her left eye (a surprise) but nowhere else. We’re anxious to see what’s happening near her eye. After that we’ll probably visit Sarah in the NICU before the 7:30 CT scan. They’ll be scanning her chest area to see if there is any evidence of cancer in her lungs. The initial scan indicated a couple spots that might have been something or might not. We’re also interested to see what turns up there. Finally we have a 9:00pm MRI of her eye. This will complement the bone scan and (I think) give more detail of the secondary tumor. Catie’s much more comfortable with these tests now that she doesn’t have to worry how the x-rays or radioactive dye will affect the baby.
We had some good news in that the MRI of Catie’s shoulder, which was performed the day after delivery, indicated the tumor had shrunk from 11cm wide to 1.4cm wide. So the cancer seems to be responding well to the chemotherapy, and if it is responsive in one place it is likely to be responsive everywhere else. We’ll find out tomorrow how the reduction in size will affect Monday’s surgery.
The doctors stopped chemotherapy for four weeks so Catie can recover from the C-section and shoulder surgery. We still don’t know when she’ll have radiation therapy. Regardless of the test results, the doctors recommend radiation near her left eye to reduce the risk of the cancer recurring. We still haven’t met with the radiation oncologist to discuss the possible side effects. We also don’t know whether radiation will be required on her shoulder.
Sarah is doing great. She has been getting increasing amounts of milk through a feeding tube (around 3 mL every 6 hours I think), in addition to her IV. She was also taken off all breathing support this morning and showed no signs of trouble. We just need her to keep growing—she’s still right around her birth weight. She’s still in an incubator, but we get to take her out and hold her for about 30 minutes each day. She loves it, and we do too. The doctors performed a heart echo on Sarah a couple days after the birth, because one of the chemotherapy drugs is known to cause heart problems. Everything looked fine.
All in all, finding out the initial diagnosis was not pleasant, but so far we couldn’t have expected better progress in her treatment or a healthier baby, given the circumstances. We are very thankful for that, and hopeful for the coming months.
October 5, 2007 (Steve)
We’re leaving for the hospital in a few minutes to discuss yesterday’s test results with Catie’s doctors. Then we’re meeting with an anesthesiologist for a pre-op visit in anticipation of Monday’s surgery. Finally, Catie will be fitted for a radiation mask in preparation for radiation therapy (near her left eye), which will probably begin in about two weeks.
We had some more good news yesterday. The surgeon who will be performing Monday’s operation said he now expects a near complete recovery because the tumor is much smaller now than it was two months ago. He will remove only about 2/3 of the clavicle and a small part of the scapula, which is less than he anticipated previously.
October 6, 2007 (Steve)
We ended up having another long day at the hospital yesterday (11am - 6pm). We started by going over the bone scan, CT scan, and MRI results with Catie’s oncologist.
The bone scan did not indicate any new tumors throughout the bones in her body, but by its nature is not able to inform us much on the progress of existing tumors. The MRI showed some decrease in the size of the secondary tumor near Catie’s eye, but she’ll still need radiation, which is now scheduled to start Oct. 22 and continue 5 days/week for 6 weeks. We didn’t enjoy hearing all the potential side effects of using radiation near the eye and brain (including blindness and a decline in short-term memory), but on the bright side there are occasions when I wish she had short-term memory loss so that’s not all bad.
The CT scan of Catie’s lungs, which was inconclusive the first time around, remains inconclusive. There are no obvious tumors in her lungs, but there are some smaller spots that might or might not be. So the good news from all the tests is that things are not getting worse.
After our appointments, we stopped in to see Sarah. She continues to do remarkably well. They continue to increase her feeds (of milk), and her breathing and heart function are great. She still weights only 2 lbs 3 oz, but she has huge feet I’m sure she will soon grow into.
The next update will probably be late Monday or early Tuesday after Catie’s surgery. Thank you for all your notes and comments. Catie’s loves to check this website—it’s the first thing she does each morning.
October 9, 2007 (Steve)
Catie’s surgery was successful. I dropped her off around 9am yesterday, then waited nervously until about 3:30 when the surgeon came out to tell me how things went. He removed the tumor itself, the entire clavicle, the acromion (an extension of the scapula), and some tissue surrounding the tumor.
The bones were removed due to the possibility the cancer had started to spread locally. The doctor initially planned to remove only 2/3 of the clavicle, but decided to remove the whole thing just in case. However, that meant he also had to remove Catie’s port, which is a device implanted under her skin below her clavicle through which she received her chemotherapy injections. She’ll have to have another surgery in two weeks or so to implant a new one on her left side before starting chemotherapy again.
The doctor removed the tumor plus an area around it they call the margin. The tumor was sent to pathology, where they will test for evidence of cancer in the margin. If the margins are clean, that indicates he removed the entire tumor. However, if they are not, then it is likely the entire tumor was not removed and they’ll have to follow up with radiation therapy on her shoulder.
As the anesthesia wore off last night, Catie was in a lot of pain, but she has a morphine clicker to keep that under control. We didn’t get a lot of sleep last night, but Catie was able to stand up and walk up and down the hall this morning. As long as the pain is under control by tomorrow, she may be able to come home. She should definitely be home by Thursday. Aside from the missing bones and muscle tissue, she has a rotator cuff tear. However, the doctor still expects a relatively full recovery—she won’t regain full strength and probably will have stiffness and soreness but should have full range of motion in her shoulder. She’s already moving her fingers and elbow a little.
So the tentative schedule is as follows. Catie will likely have one more surgery late next week to implant another access port. That is a one-day procedure. Then on Monday, Oct. 22, she’ll start radiation therapy near her eye—five days a week for six weeks. On Thursday, Oct. 25, she’ll resume her regular every-two-week schedule of chemotherapy (for about five more months), then sometime the following week she’ll start physical therapy on her shoulder. By early December the worst part of her treatment should be over.
Sarah continues to do very well, which is a source of hope and happiness for Catie. She’s still breathing on her own, and now she is eating only milk. The doctors removed an IV that was providing nutritional supplements. She still has a feeding tube, but in a couple weeks she should be coordinated enough to breathe, suck, and swallow at the same time. Hopefully Catie will be able to get out and see her later today or tomorrow.
October 10, 2007 (Steve)
We just returned home from the hospital, and the first thing Catie wanted to do was check the website to read all your comments. Catie has been thinking about all of you often, and your friendship and notes mean so much to her. All those smiles you see in the pictures are not because of me.
We slept a little better last night, until the physical therapist came in at 7:30am to start her on her first of three tests required before she could go home. He checked her off on the first two—walking up and down some steps and getting into and out of a car (or at least a partial replica of one on her floor). The third test was removing her IV and morphine access. She didn’t have any problems. She’s now taking oral pain medication so there was no reason to stay in the hospital. On the way home we stopped by the Dairy Queen drive through for Catie’s biggest indulgence since she started her new (extra nutritious) diet three months ago. She earned it.
David and Mary are in Tennessee for another week, so we have some time to get Catie rehabilitated before they start jumping on her. She can’t move her arm, but she has to bend over and let it hang loose and gently sway back and forth three times a day. The doctors removed some bone that muscles were attached to, so it will be a little while before her strength comes back.
Catie wanted me to write that she loves you all and appreciates your prayers and support more than you probably know.
October 11, 2007 (Steve)
Not much to talk about today. We just took it easy at home.
Catie has been feeling better today. The doctor told her not to lift her arm until further notice, which will be at least another week, but the pain has been going down. She watched a couple shows on the Food Network, which seemed to help—distractions are nice. However, she probably won’t be cooking anytime soon.
I changed the dressing on Catie’s incision tonight. If you’re not faint of heart you can scroll down to see a picture. I think there are at least 50 staples. You can also see another incision below the larger one where they removed her port. She’s scheduled for surgery on Oct. 25 to implant a new one on the other side, then resume chemotherapy that night.
We really miss our kids, who are in Tennessee until next Wednesday. One of the hardest things for Catie has been not being able to spend as much time with them doing the things they usually do. They love Catie and continue to pray for her, even without any prompting from us. A while back David mixed up his words during a prayer and said “thank you for mommy’s shoulder” instead of “bless mommy’s shoulder.” I’m sure he realized we were laughing about it, because “thank you for mommy’s shoulder” became a staple in each of his prayers. Mary of course followed suit. Now we’re all thankful for mommy’s shoulder.
October 13, 2007 (Steve)
Today has been another uneventful day. I was tempted to fabricate a story to make this website visit worth your while, but I remembered that sometimes no news is good news. More often than not, that has been the case for us recently.
Although we miss the kids terribly, there are some advantages to being here alone. Catie has been able to get lots of rest; we both have been sleeping in each day. Yesterday we had a long visit with Sarah in the NICU (I posted several new pictures). She is doing very well—up a couple ounces from her birth weight. They’ve been increasing her feeds each day to help her continue growing. The only mild concern recently is that she has begun to spit up on occasion. They changed her feeding tube and held her feeds constant yesterday, and she was fine today. Sarah has been more awake and alert recently, and we like to think she can recognize us when we visit.
On the way back from the hospital we stopped by some friends’ homes in Chapel Hill to return books and DVDs lent to Catie for her hospital visits then returned home to make English muffin pizzas and watch “We Are Marshall”. On nights like that we can almost forget about everything else that has been going on.
Catie’s shoulder is feeling much better. I don’t think she took any pain medication today. Her staples bother her some, but she is scheduled to have those removed on Thursday. She has been working on her shoulder joint. She can’t use the muscles yet, but she bends over and lets her arm sway back and forth. Her full physical therapy will start in three weeks. My understanding is that the injury she’s rehabilitating is similar to a rotator cuff tear. However, instead of being torn it was cut by the surgeon and two of her bones are missing. I was searching online for information about the removal of a clavicle and found an old textbook that described the surgical removal of a man’s clavicle in 1896 (using a chainsaw). As you can see in the picture below, he turned out just fine. I think the removal of the acromion process will be harder to rehabilitate because of the muscles that were attached to it. But still, the surgeon was optimistic about her recovery and so are we.
October 15, 2007 (Catie)
Hello everyone! I have been wanting to write and now I’m finally gaining enough strength back in my fingers and arm to write a little note. I first want to tell you all how much I love you and what wonderful friends and examples you are to me. I have been very blessed during my treatments and surgeries to this point, but there are moments here and there when I do get discouraged. Knowing that all of you are praying for and supporting our family helps lift me up. I thank you all so much for everything. I wish I could respond to all your comments on this website, but I want you to know that I read each of them and I truly appreciate them.
Being in the hospital so much has given me plenty of time to think. A good part of my thoughts have been about my family and friends. I am just amazed by all the incredible people that have crossed my path during my life. I am so lucky!!! I have learned so much from each of you and also have so many fun and happy memories. My understanding of the importance of family has increased greatly, and I am so thankful for my parents and siblings as well as Steve’s parents and siblings and their love for me and my family. I’ve got a “few” more hospital stays and I look forward to thinking about each of you more!
We visited Sarah today and she is another person who makes me happy and inspires me. It’s amazing how small she is yet all her little parts are there. My family visited us last weekend and my older brother Jamie said she looked like Gollum from the Lord of the Rings movie. I of course was greatly offended by this comparison, but it is true she is skin and bones! Today she is up 4 ounces from her birth weight so we are happy that she now weighs 2 and 1/2 pounds!! (although Steve still insists he has eaten hamburgers bigger than that). It will be so fun and exciting when she gets to come home, hopefully at the beginning of December. She will be a wonderful Christmas present.
Steve is sad that I’m getting my staples out this week. He thought that between my bald head and staples I would have made a wonderful Frankenstein for Halloween! I can’t tell you all how wonderful and supportive my husband has been through all of this. I could write several paragraphs listing all that he has done for me, but I won’t (he would just edit it all out anyway). I just want him to know how much I love and appreciate him. You know the phrase “Laughter is the best medicine”, well it’s true and he keeps me medicated.
October 18, 2007 (Steve)
Catie’s staples were removed today (she has a really cool looking scar). We also found out the results from the pathology report—they believe the surgeon removed the entire tumor. That means the area around Catie’s shoulder (where the primary tumor was located) seems to be under control, and no further local treatment to that area (i.e., radiation) is needed. Now we just have to take care of the area around her eye and anywhere else it might have spread that is too small to show up on the tests. Psychologically, however, having the original source removed is a big relief. We’ll start dealing with the area around her eye on Monday with radiation, and for anything else we’re relying on five more months of chemotherapy. Because the primary tumor responded so well to chemotherapy, we’re very hopeful that everything else will too.
Sarah still continues to amaze us. Yesterday the doctor over the NICU told us she was probably the healthiest baby in there (please don’t tell the other parents!). She now weighs nearly 2lbs 11oz and just yesterday started drinking out of a bottle. She still gets most of her milk through a feeding tube, but we were able to feed her a few milliliters earlier today. If this pace continues, she may be able to come home around Thanksgiving.
We’re so happy to have David and Mary back home. After ten days in Tennessee, I think Mary started to forget about everything that had been going on here. Last night, after their bath, I was drying Mary’s hair then let her use the brush on my hair. That was so much fun she decided to run across the room to Catie (who had removed her hat) to brush her hair. But right as Mary started to lift the brush to Catie’s head, she suddenly froze with a confused look on her face. She asked, “Where’d your hair go, Mommy?”. We had a good laugh. Catie then tried to let Mary brush her head but she wouldn’t.
October 21, 2007 (Steve)
We had a nice, quiet weekend at home. Catie’s brother Andrew and sister-in-law Marianne drove up from Atlanta to stay with us.
Sarah had a minor setback on Friday but seems to be fine now. Her hematocrit (red blood cell level) had been running low, then late this week the doctors decided to give her a blood transfusion. Her blood’s oxygen saturation levels had been consistently low, which is a natural consequence of a low red blood cell count. At first they could not get a good IV in place, then they finally were able to place one on the top of her head. The transfusion went fine, but Sarah had to go 10 hours without eating, which she didn’t like. It was difficult to see her with a needle in her scalp, squirming and whimpering from hunger, but she made it (she’s usually very calm and quiet). However, despite missing some meals she’s still up in weight. She’s now at 2lbs 13oz. Also, her oxygen saturation levels have been higher, so the transfusion seems to have accomplished its purpose.
Tomorrow Catie is starting radiation near her left eye. Unlike the tumor near her shoulder, this secondary tumor cannot (easily) be removed through surgery. So radiation was the best option. Radiation scares me more than chemotherapy. We had a long discussion with the doctor about potential side effects, which include secondary cancers, blindness, memory loss, dry eyes, cataracts, skin damage, and fatigue. However, we know the tumor is there, so we need to do something about it. Plus, the risks for the major side effects are relatively low, and we’re confident that with all your prayers Catie will be fine.
October 25, 2007 (Steve)
Catie’s radiation treatment has been uneventful so far. She hasn’t felt any side effects yet, except maybe fatigue. But she hasn’t not felt tired for a couple months, so it’s hard to know what to attribute that to (I think it’s from my being around the house more than usual).
They let me follow Catie back and watch this morning. About a week ago, she came in and was fitted for a mask, which they put on her for each treatment. It is a tight-fitting plastic mask criss-crossed with holes through which she can breathe. After the mask is on, they lay her down on the table and attach the mask to the table, locking her into place. They then take multiple x-rays of her head from different angles to make sure she is perfectly lined up. Then they tell her to look down (her eyes—her head won’t move) to keep her eye’s lens away from the beam that is aimed just above it. Finally, they start the radiation therapy, which is about 6 short zaps (~10 seconds each) from different angles. They come from different angles to reduce the exposure to healthy tissue surrounding the tumor.
We had an early 7am radiation treatment this morning (I’m using a computer in the waiting room), and now we’re heading over to the main hospital for an 8am port placement. That is a fairly short surgery (about 1 hour), but with the prep and recovery time should take until around 1pm. As soon as we’re done we’ll head over for a visit with Catie’s doctor, then she’ll be admitted to the hospital to begin chemotherapy later tonight.
She asked me to tell you all she loves you!
October 28, 2007 (Catie)
There are some real pros and cons to having my body’s rapidly dividing cells destroyed. The biggest pro of course is that (hopefully) all the cancer cells will be destroyed and the second biggest pro is that I haven’t had to shave my legs in months! The cons are that I’m bald and scare little kids at church and another is that as my eyelashes naturally fall out they don’t replenish themselves. So, I’m losing my eyelashes and can no longer use mascara. I know it seems like a little thing, but since I practically live in pajamas these days and spend so much time at the hospital, putting on a little lipstick and mascara can really lift my spirits and make me feel pretty despite all the scars and baldness. I guess I should be thankful I’m not losing my lips and just keep putting on lipstick and just smile.
I’m so thankful that the past couple of days are over. We started early Thursday morning with a radiation treatment at 7am followed by my port placement surgery and then on to the clinic to see my doctors. By the time I got there I was already so tired and so sore from the port placement that I couldn’t help but be emotional. I have a wonderful doctor, Dr. Jennifer Walker, who got me some medication right away to help relax me and ease the pain. After speaking with her and another doctor we waited for my hospital room to become available. Once we got to a room and got settled I was hydrated and then given my chemo—by this time it was the middle of the night. After I receive chemo I’m given something called Mesna, which protects my bladder and kidneys, four and eight hours after the chemo is finished. After the Mesna is over I was hydrated a little more and then discharged, around 3pm. During all of this on Thursday and Friday morning the thing that kept me going was thinking that as soon as I was discharged I could go see our sweet baby Sarah. We headed straight down to the TCN (transitional care unit) and I just held her for the longest time. She is beautiful. I could have sat there and held her all evening, but I had to go to another radiation treatment at 5pm. She is truly a miracle baby and I am so thankful that I get to be her mom. I think we are going to be best friends.
They moved Sarah from the NICU to the TCN just a few days ago because she is doing so well. She still receives the same care, but since she is mainly just growing and learning to feed from a bottle many of the NICU’s resources aren’t necessary. So, hopefully by the end of November she will be able to come home. It will be perfect timing because my radiation treatments should be over by then and I will also have a month of physical therapy done and should be strong enough to do things for her.
I’m not extremely eloquent and even though I majored in English I often have a hard time putting all my thoughts down on paper. I just want to express my thanks and love to my Heavenly Father for his watchful eye in all that has and is happening in my life and the life of my family. I know He is there. When this all started there were a few days that I felt so overwhelmed I honestly did not think I could handle everything. I have never felt like that before. I knew that Heavenly Father will never give us more than we handle, but I felt like I was so close to the edge of this. But then as we came to grips with what our life was going to be like for the next 8-9 months I started to calm down and since then nothing has come sooner than I could handle it. After Sarah was born and I knew that surgery, radiation and more chemo were coming and there were a few days that I began to get that overwhelmed feeling again, but then I felt peace. As soon as my abdomen felt recovered from the c-section I had surgery, then as soon as my arm was well enough for me to stretch it out straight enough to lay down flat my radiation treatments began, and as soon as I could go without my arm in a sling my port placement happened. Even though all of these things were already planned and on the calendar before I could say I felt ready for them, I was able to be ready for them. I know that Heavenly Father was and is watching over me and even though it is a lot that is happening He is not allowing anything to come at me sooner than I am able to handle it. I am so thankful for that. I am also learning more and more everyday that during the Atonement of our Savior. He suffered not only for our sins but truly for all that hurts us, our sicknesses and grief, and our pain no matter what kind can be eased by Him.
I continue to be strengthened by your prayers and support and would love to give every single one of you a HUGE HUG! Thank you so much for your love and friendship. Since I’m trying to keep my immune system in as tip-top condition as I can I probably won’t be snacking on too many Halloween treats this week, so eat a few pieces of chocolate for me! Happy Halloween!
November 1, 2007 (Steve)
Catie has been handling her radiation treatments very well. Aside from fatigue, she still has not felt any significant side effects. She was even able to take David and Mary door-to-door for Halloween last night right after returning home from her 5pm treatment. The four of us went out for about 30 minutes; by then Catie was tired and Mary had already collected more candy than she had ever seen in her entire life (somehow she had much more than David at that point—I think she must have grabbed a couple handfuls from an unattended basket when I wasn’t looking). So David and I dropped them off at home and went back out for another hour.
David’s a smart kid. Realizing he was a cute little boy in a cute little lion costume (made by Catie’s mother) that no one could say “no” to, he began asking for additional pieces of candy at each house. I had been waiting on the driveways, so I didn’t realize at first what was going on. As soon as I did, I held back a proud smile and told him he could only take one per house. Plus, I started following him to the door. Two houses later, a woman had a bowl of smaller items and told him to take two. Confused, he looked back and forth between me and the woman until I told him it was okay. He now understood he could take more than one only if it was offered to him. A few houses later, a man told him to take “a couple”, after which David quickly grabbed a handful then turned to me and said, “I think a couple means six”. By the end of the night, he was a very efficient trick-or-treater. I taught him the hierarchy of candy; for example, don’t take a Butterfinger when Twix is available, and only take Smarties when nothing else is offered, etc.
Sarah is really growing. She was born at 2 lbs 4 oz then dropped to about 2 lbs shortly after birth. On Tuesday she was already at 3 lbs 7 oz. She is also eating more of her milk by bottle rather than through a feeding tube. Her diet is 31 mL of milk every 3 hours. Every other feeding is entirely by bottle, and the rest are through her feeding tube. They’ll continue to increase her bottle feeds as long as she is still gaining weight (i.e., not burning too many calories eating). Also, they took her out of her incubator yesterday, which we were very excited about (not so much that they took her out but that they thought she was ready to come out). Now we can hold her as much as we want instead of just 30 minutes a day.
November 5, 2007 (Steve)
Sarah is coming home tomorrow, one month ahead of schedule. Her doctor called this morning and said there was no reason for her to stay at the hospital any longer. Her feeding tube was removed three days ago, and she’s been taking her bottle without any problems ever since. She doesn’t have any trouble breathing, and all her tests have come out negative (negative in a positive way). So she’s coming home, even though she weighs only 3 lbs 12 oz.
When we visited her yesterday, the nurse told us she might be ready to come home next week. So we were a little surprised by the call this morning. We’ve been scrambling to get everything ready for her at home. We are all excited, especially Catie. She called it an early Christmas present, and I know she meant it. There is nothing she wants more than to be with her kids. It’s going to be hard for her to spend five days in the hospital starting Thursday, so soon after Sarah comes home. But at least she’ll have something big to look forward to when she returns the following Monday or Tuesday.
November 8, 2007 (Steve)
Sarah is a wonderful, happy baby. She’s been eating a lot and sleeping often, which is all we could hope for. She eats every three hours. We start by waking her up; she’s usually hungry already so that part is easy. Then I like to give her a couple minutes of supervised tummy time. She spends so much time on her back that you’d think she’d appreciate a few minutes in a different position, but earlier tonight she flipped herself back over. This also helps wake her up in time to drink 1 to 2 oz of milk. After that it’s a quick diaper change followed by some snuggling and then back to sleep. So far, she’s been great about going back to sleep.
After just one and a half days at home with Sarah, Catie is back in the hospital through Monday for chemotherapy. We can’t seem to get away from the hospital and doctors. After our daily trips to the NICU ended on Tuesday, Catie started physical therapy on Wednesday. She does not yet have strength in her right shoulder, but some assisted motion felt good to her.
The kids are spending lots of time with Catie’s mother. With Catie in the hospital, I’m part time with the kids and part time with her. We’re so thankful David and Mary have been so easy going about everything, whether it’s being dropped off with a babysitter they don’t know (they don’t, but we do!) or saying yet another good-bye to Catie as she leaves for the hospital. We love our children.
November 17, 2007 (Catie)
I can’t wait until I finish radiation on Tuesday! I feel like my head has been cooking in a microwave. Other than fatigue, I didn’t feel any major side effects at first, but this past week the radiation has begun to take its toll. My left eyebrow has completely fallen out, I have a red circle above my eye, and I have felt more nauseous than ever before. I know the radiation is needed to treat my cancer, but I am still thankful it is nearly over. More so than with chemotherapy, it has been mentally challenging just knowing what kind of unintended consequences might arise. However, my vision is still great (and I’ve tested out my tear ducts more than a few times!) and we are hopeful that the long-term side effects will be minimal. I think when radiation is complete on Tuesday it might call for another stop at Dairy Queen to celebrate!
Physical therapy is going really well. I am gaining more strength and motion every day. My shoulder has been stationary for so long that it feels so good when the therapist stretches and works my muscles. Physical therapy will continue for two to three times a week for a few months, or until I gain full range of motion and strength.
Sarah continues to grow! She is drinking close to 2 oz. of milk every three hours and doing so well. She is even growing out of some of her smallest preemie outfits. I love to sit and hold her while I watch David and Mary play. Last night I was feeding Sarah while David and Mary passed a ball back and forth as we listened to Christmas music in the background. My heaven on earth is being with my family. I love them so much.
November 28, 2007 (Catie)
I am completely overwhelmed as I write this post. The blessings I am experiencing in my life are so great. This past week I have felt so good and I am so thankful for that. Now that radiation on the tumor over my eye is complete and the shoulder tumor has been removed the doctors say that as far as they know I might not have any cancer cells left in my body. Isn’t that wonderful! Of course we will continue with the rest of the chemotherapy regimen to ensure this is true, but I am just so grateful for life right now.
Thanksgiving was a wonderful day. My parents, little brother and sister, and my older brother and his family joined us here in North Carolina for the holiday. My mom made a wonderful and yummy meal. Before we sat down to eat we gathered in our living room. Steve asked each of us to go around and say the one thing we are the most thankful for. My health issues over the past few months have not just affected the lives of Steve and our children, but have affected the lives of our families as well. It was so touching to hear the things my family are thankful for and to understand the depth of that thankfulness with respect to all that has been happening. While trials and difficult experiences bring pain and suffering they also bring such knowledge and greater understanding and these are huge blessings. Trials allow us to gain a deeper and more powerful gratefulness for all that is good and for the blessings we have. I am thankful for so much at this time and while this experience that I am going through is so difficult, I am very thankful for it.
Sarah is, as always, so beautiful. She had her follow-up eye exam this morning and her optic nerve is now completely developed. She is gaining weight (5 ½ pounds now!). She continues to be a miracle in my eyes. She is living proof of the goodness of God. David and Mary are also such blessings to me and continue to make life so normal and fun for me. I am so thankful for my children.
Steve is a wonderful husband and father. He helps me so much and as always makes me laugh. He has been so strong through all of this and that has helped me so much. His faith is solid. I love him so much and am so thankful for him.
My family is sacrificing so much at this time. My mom continues to live here with us, cooking and cleaning for us and watching the kids while we go to doctor’s appointments and helping me so Steve can go to work between my hospital visits. It is never fun to be away from home for even a few days let alone for months on end and we are so grateful for her. While she is here my dad plays the part of both Mom and Dad to my little brother and sister who haven’t complained a bit when they have to eat soup and sandwiches instead of my mom’s wonderful homemade cooking. I am so thankful for my family.
I am so thankful for all of you who continue to pray for us and rally around us. The letters I have received have been so touching. We are all different in where we live, what we do, how we worship, yet we all have faith in God. This is so wonderful. Your faith has increased mine and I cannot tell you how thankful I am for your love, prayers and concern.
December 13, 2007 (Steve)
We’re writing this post from the hospital—the wireless internet here is actually working for the first time. We’re just waiting for her chemotherapy drugs to arrive so she can begin treatment. The sooner we start the sooner we leave on Monday. Being admitted takes several hours. We first check in and wait for a room at the pediatric oncology clinic at the Children’s Hospital. Then Catie gets her vital signs checked, blood drawn, and an IV inserted. She gets infused with saline for several hours in preparation for the chemotherapy. Then we visit with her doctors, and once the blood tests are completed and she is cleared for admission, we’re ready to head over to the main hospital as soon as a room is available, which sometimes takes a few additional hours. Today was a good day and we were able to make it over sooner than usual.
Sarah has been home for over a month. By her expected due date on December 6, she already weighed 6 lbs 4 oz. In the five weeks she’s been home she has gained 3 lbs. She has not started to focus on us, but she does respond to light. I think we need to remember that she is still a newborn developmentally rather than a three month old infant. She used to sleep all day and be up at night, but we’ve been working on that. She’s doing a little better now. We have, however, had to move her out of our room and into the hall at night because she grunts and snorts so much in her sleep it was keeping us up all night. I’ve never heard such big noises from such a cute little girl.
Catie’s treatment has been going well, and she’s getting over some of the lingering effects of radiation. Her radiation burn has disappeared, which is a good thing because it was confusing Mary. Mary asked Catie one day if she spilled grape juice on her head. Catie also has been feeling much better since getting sick near the end of radiation. The past week or so she actually had a good deal of energy and was able to get a lot of little things done that she had been meaning to for some time. She’ll have some additional tests probably in January to see how successful the radiation was.
Now that Catie has gotten through the the birth, surgery, radiation, and half of chemotherapy, we’re hoping the hardest parts are over. She just has chemotherapy every other week until March. Hopefully we won’t have much new news for you and that things continue to progress according to plan. We will continue to post pictures and occasional updates. We continue to be so thankful for your friendship, love, and support.
January 6, 2008 (Catie)
Happy New Year to each of you. I am definitely looking forward to 2008 and all the good that is in store this year.
I don’t have too much news to share as far as my treatments go, which is a good thing! I continue to go in every other Thursday and it looks like treatments will end somewhere around the end of March if all continues to go well. I go into the hospital on Thursday for five days and during that time the doctors plan to have all the tests (bone scan, CT scans, and MRIs) re-done to check what my body is looking like at this time.
Modern medicine is amazing and I am so grateful to live so close to a wonderful hospital. We are constantly asked by different people at the hospital where we are from because most of the patients come from hours away to be treated at Duke. We live only thirty minutes from the hospital and that is a huge blessing.
I have really been feeling well and have enjoyed being with my family this holiday season so much. I can’t explain the sheer joy I feel from caring for my children. It is all I want to do. It is my greatest desire. No matter what it is I’m doing—reading books with my them, feeding them lunch, changing their clothes, wiping up messes, tucking them in at night—it makes me completely happy. I am so grateful for them.
You all continue to be such a huge support to my family. I love you all and am so thankful for your faith and friendship. I hope I get to see many of you in 2008 and give you really big hugs! We will be sure to give an update next week after my tests are re-done. I hope you each have a wonderful weekend.
January 15, 2008 (Steve)
Catie and I have been so grateful for the love you’ve all shown us—through phone calls, letters, packages, and comments on this website. Just knowing you are thinking of us has been a huge comfort for Catie and our family these past several months. We have been fortunate to have great friends, tremendous help from family, an accommodating employer, and gracious blessings from the Lord, which have allowed us to keep things under control.
Many of you have expressed a desire to help us out further in some way. Although there is nothing more we can think of for us, as we have gotten to know other patients we’ve realized that many are not as fortunate during their treatments. We encourage any of you who are interested to support one of the many cancer research and cancer support organizations.
January 21, 2008 (Catie)
We hope you each are having a wonderful 2008!
When I was in the hospital last week the doctors had a CT of my chest and MRI of my eye done. The results from both tests came back as “stable”, meaning that things look the same as they did when these tests were previously performed. The doctors tell us that this is good. We are glad that things look good, although I think I am always hoping that the doctors come back saying something a little more earth shattering, but such it is with cancer. No change is good and we are happy it is not getting worse. They plan to do all the tests again in May, a couple of months after my treatments are complete.
I have four treatments left! It is hard to believe that the end is in sight. I have tried to enjoy each day since I was diagnosed although I’m looking forward and waiting for the day when I won’t have chemotherapy surging through my veins every other week. My last treatment should be the first week of March if all continues on schedule.
This “cancer journey” is just unreal. I continue to be so thankful for my family and love them so much. I continue to be amazed at the love my Heavenly Father and Savior have for me and for their awareness of our situation. I continue to gain so much strength from the scriptures, reading and understanding things I did not before. I continue to be so grateful for the love and prayers of our families and so many friends. Thank you.
Sarah is now almost four months old and 8 1/2 pounds! We were blessed to have some of Steve’s family and my family both in town this past weekend so we had Sarah’s baby blessing here at our home Friday night. It was a beautiful blessing and a wonderful evening. We are so grateful for our families and their love and support. Sarah is beautiful and a constant reminder that miracles happen.
February 9, 2008 (Catie)
Happy February! I hope that everyone is enjoying this month as much as me! There were days I thought that February would never arrive, but it has and now I can say that next month my treatments will end. Wow.
I am here in the hospital right now for a five day stay, my twelfth out of fourteen treatments. The nurses are so great and everyone is getting so excited for me. I have not let myself get too excited or giddy the last couple of months, but I can’t contain my excitement any longer. I am so happy not to have to leave my sweet kids anymore! I miss them so much when I’m here.
As for an update on how things are progressing. Two weeks ago I came in for my two-day treatment and my red blood count levels had been very low for a couple of weeks. The doctors waited those two weeks to see if my body would recover on its own, but it didn’t so I had a blood transfusion. After going home from this treatment my hands also had a bad reaction to one of the drugs, doxorubicin, and became very red, hot, and painful. That only lasted for a few days, now they are extremely dry and cracking, like they were burned from the inside. They have given me a prescription moisturizer and so I’m sure they’ll be back to normal in no time.
I had my first mouth blister after my last treatment. It was small and went away quickly. Lastly, I have entered the world of women with hot flashes. The chemotherapy has triggered early-onset menopause. The doctors don’t know if after my treatments are over this process will reverse itself or not. I am constantly grateful for the three beautiful children we have already been blessed with. I continue to be reminded of what a special blessing Sarah is. If I had been diagnosed properly from day one we would not have become pregnant with her, and she very easily could not have survived all that she did. She is our gift from God.
I have been so blessed throughout this entire process with very little side effects from the treatments. I know the Lord has protected me and watched over me every step of the way, helping us to deal with one thing at a time and never giving us more to handle than we can.
Now that I am part of this Cancer World that exists I am so aware of how short life is. Family is the most important. Relationships are what count. The phrase “don’t sweat the small stuff” couldn’t be more true. Learning of the Savior, who and how He really was and trying to be like Him is so important. We all have trials in this life, it is impossible to escape or hide from them, but I know the Lord is there to help us through, His arms are outstretched and we can hand over to him our pain and anguish, He will gladly carry this for us while we endure to the end.
I can’t thank you all enough for your friendship and continued support. I hope I haven’t babbled too much in this update, thank you for letting me share our story with you.
March 7, 2008 (Catie)
Our 14th chemo treatment is here at last! This is day 2 in the hospital and I can hardly believe I am here. My emotions have been all over the place the past few days. I am excited, thankful and just overwhelmed by it all. The tears Steve and I have shed the past week have been of joy and hope compared to nine months ago when they were tears of fear and anxiety. That is a wonderful thing.
Mary was looking at a picture album the other day and exclaimed, “Mommy you have hair, lots of hair!” I don’t even think she remembers me having hair—it has been so long since I did. It will be great to have hair and eyelashes again. But really, I could go without hair and eyelashes forever if I needed to. What I don’t want to do is to continue to have to leave my children every other week to come into the hospital and to be so tired all the time.
I can’t explain how excited I am to have the energy to take my kids to the park (on my own!) or to not be so concerned about germs (because of my compromised immune system) and take them to Chick-fil-A for lunch and all those things that we used to do. David has loved having Steve attend his “special day” at preschool each month, but I can’t wait until I can go to his special day. I can’t wait to begin attending church with my family each week and having friends over for dinner and games. I’m excited to be able to invite Mary’s friends over for play dates. I’ll never complain about grocery shopping again—I can’t wait to go to the store!! My family means the world to me, all I want to do is teach them, love them and be with them.
So, this is my last treatment. Yea!! The past few weeks my blood counts have been down, I’ve developed some mouth sores and the insides of my hands have been burning, BUT I’m recovering from those things and will hopefully not experience anything else besides fatigue and then that will wear off and I’ll just work on getting my stamina and immune system back in shape.
The schedule for the coming year is that I will come back to clinic once a month for a routine check-up. They’ll check my blood counts and do a basic physical exam. Every third month during this first year they will do scans and MRIs to make sure the cancer is not coming back (which it won’t!). They will also take my IV access port out in about 6 months. After the first year the check-ups will be every 2 months, then every 3 months, and by year 5 I will probably be coming in just twice a year. So while my chemotherapy is (almost) complete this will be something that will be part of our life for a while. We have felt so much peace and I know we just need to live everyday to the fullest and remember that the Lord is watching over us.
Our friends and family are so important to us and we continue to be so grateful for all the prayers offered in our behalf. We all face trials in this life of many different shapes, sizes and forms and it is so comforting to know that there are people around us that care and are concerned. I care and am concerned for each of you. Please let Steve and I know if there is anything we can ever do for you. We owe each of you so much for praying for us and loving us during this trial in our life.
March 20, 2008 (Catie)
With more happiness than I can express I’m writing this update from my home and not from the hospital this lovely Thursday evening!! We are about to order my favorite pizza in celebration of not having a treatment this week. After getting my labs drawn this morning the doctor called saying that my counts look good and I can stop getting my blood drawn for the time being—yea, my veins are excited about that. Steve can also stop giving me my nightly shot.
Since my last treatment ended I have felt so much relief, more than I thought I would feel. The kids feel it too. A few different times this week when we’ve been reading books or just hanging out together Mary or David would lean over and hug me and say, “Mommy, I love you, I’m so glad you don’t have to sleep at the hospital anymore.” There is a huge sense of relief in all of us, it is so wonderful. I am so thankful.
I am feeling good. I can tell it is going to take some time to regain my full strength, but we are doing well. They have already scheduled an MRI the first week in April so we will continue to post updates as I have check-up and tests done. Sarah had a check-up today and she looks great. She is small, but healthy. She is such a good, sweet baby and a constant reminder of all the miracles we have seen in our life.
We love you all. Thank you so much for your sweet comments, friendship and prayers.
March 31, 2007 (Catie)
This weekend was a wonderful celebration! My parents, Christopher, Elizabeth, Andrew and sister-in-law Marianne all came into town to help us celebrate the end of my treatments and the beginning of a new life. It was a wonderful weekend filled with lots of laughter, a little shopping, yummy food and a great little party.
We have said it before, but we are so very grateful for both of our families and the wonderful support they have been to us. It is a huge blessing to live so close to my family and for my mom living with us during all of this. We will never be able to thank her enough for all she has done for us. We love her and are so grateful for her. My dad and youngest brother and sister have been such great sports and haven’t complained at all while she has been with us. I love my family so much. My siblings and their families have been amazingly supportive and loving and I am just so thankful for the family my Heavenly Father has blessed me with.
I am feeling better each day and just waiting for my hair to start sprouting! I have an MRI and CT scan scheduled for this coming week and we’ll post an update when we receive the results of those tests.
Thank you all for your continued love and support and friendship. We are excited to travel more this year and will hopefully see many of you!
April 8, 2008 (Catie)
I continue to be overwhelmed with gratitude for my children and family. David, Mary and Sarah have been such a source of joy as we’ve journeyed through this cancer experience and I just love them so much. I am so grateful that I am a mother. I really feel that my Heavenly Father has blessed me so that I can take care of them.
The MRI and CT results came back unchanged from previous scans. This is a great thing, nothing has changed or is growing. We of course were very hopeful this would be the case, but it was good to get the results. They will do scans again at the beginning of May and then will start doing them every three months instead of monthly.
It is true, as many of you mentioned in your comments (which I love to read, thank you!) that it is neat how as my treatments have come to an end and as I begin a “new life” the world too is coming to life again. I hope my hair grows as fast as the weeds in our flower beds! I am so grateful for this time of year and the celebration of Easter. I know that the Savior was resurrected and that as He lived again so will we. I don’t think I’ve ever appreciated the thought of one day having a perfect body as I do now.
So, I guess we won’t have any official news until I have my scans next month. We will definitely post an update after those tests are complete. I hope you each are well. I love you and am so grateful for your love and friendship. Have a wonderful month!
May 5, 2008 (Catie)
Hello everyone! I hope that April was a wonderful month for each of you. The update this month is that there is no update. :-) My oncologists decided to wait three months rather than just one to repeat my scans. So, my scans will take place at the end of June. I will definitely post an update when those scans are done.
I keep reflecting on this past year, and I’m sure I’ll continue to do this the rest of my life, and I continue to be amazed at the perfect plan our Heavenly Father has prepared. I know that we lived with Him before this life and that we will live with Him after. I spent a lot of time at the hospital over the past year. I spent everyday for two months in the NICU with Sarah, each day seeing sweet new little spirits come into the world. I also spent a lot of time during my treatments on the oncology unit hearing the cries of people as their loved ones slipped from this life into the next. Seeing people come and people go reminded me that our time here on the earth really is just one stop on our eternal journey.
Steve and my kids say hello to everyone—I love them so much. The past six weeks I’ve been feeling SO MUCH BETTER and it has been great to be a fun mom again!
Happy May to everyone (and Happy Mother’s Day to all you mothers!).
June 26, 2008 (Catie)
This has been a VERY good Thursday. For a long time I dreaded Thursdays, as they were the day I had to be admitted for my chemo, but now I don’t mind Thursdays at all!
I had a CT scan of my chest and a full-body bone scan yesterday and this morning I had an MRI of my head. After the MRI Steve and I met with my doctors. All my tests came back clean and clear. No sign of any cancerous growth in my body. I am very, very thankful for this good news. I couldn’t help but shed a few tears of joy. We continue to feel such peace about everything, but I can’t help but get uptight as I lay inside those cold machines getting examined. Learning the results today was wonderful.
Everyone asks me if I am in “remission”. I asked my doctors about this because they haven’t mentioned the word at all. They said that the word “remission” has no particular medical definition. For me they say I am “NED” (No Evidence of Disease). Steve thinks this is a cute nickname for me, so if you hear him referring to Ned, I’m proud to say that’s me!!
I have my next scans scheduled for the end of September. After those results come back I will have the IV port that has been implanted in my chest the past year removed. They will continue to repeat my scans every three months for the next two years then less frequently after that.
Thank you, thank you, thank you for all your love, friendship, faith, and prayers. I am so grateful for the excellent medical care I have received during this experience, but that care alone is not what has rid my body of cancer. Without all of your faith and prayers and the tender mercies of my Heavenly Father I would not be “Ned” :-). Our sweet Sarah would not be here either. I love you all so much.
Sarah is doing excellent. She is an angel. She is beautiful. She is sitting-up, spitting-up, beginning to crawl, and the happiest, most content baby I have ever seen. We love her so much. She is our miracle and has been such a joy to us through everything.
September 28, 2008 (Catie)
This has been a weekend of celebration! Thursday and Friday were spent at the hospital. Thursday I had tests all day (blood tests, MRI, CT, Bone Scan, and an ECHO of my heart). At about 4pm we met with the doctor who said that all the tests looked wonderful. There have been no changes from previous tests and there is no evidence of disease (NED as the doctors call it). I continue to be so blessed.
Since all the tests looked good on Friday morning I had the IV access port that has been in my chest for the past year removed. Having that out of my body feels so good. The procedure was quite short and I was in and out of the hospital in just a few hours.
Saturday we celebrated Sarah’s Birthday! It is hard to believe that she is a year old. So much has happened, some days were so very long but to look back on it now things have gone so quickly, for which I am very thankful. Sarah continues to be the greatest joy. She is beautiful and healthy. We are beyond blessed and are so grateful she is a part of our family. Grandmama was here to celebrate with us and it was just a wonderful weekend.
Thank you so much for your continued prayers, faith, friendship and support. Steve will tell you that I cry just about everyday, not because I’m sad but because I am so happy and continue to be so overwhelmed by the love and faith of so many friends and family, AND because of the many blessings that our Heavenly Father continues to give us.
My next set of tests is scheduled for the middle of December. I wish a very Happy Fall to you all!!
December 20, 2008 (Catie)
Happy Holidays to everyone! It is amazing that another year has come and gone. I have to admit that I am glad this particular year has passed quickly. While I am sad to see my sweet children growing up so quickly, I am very glad to have treatments behind me and four sets of follow-up tests also.
I had my most recent set of tests last Thursday, Dec. 18th. The MRI, bone scan, and blood work all came back “clean”. The CT scan of my lungs was inconclusive because it turns out the terrible cough I’ve had is a result of pneumonia, which means all they could see was a bunch of gunk in my lungs. The doctors want to repeat the CT in a month after I’ve had a course of antibiotics.
I continue to feel so blessed to have a Heavenly Father who is constantly aware of my family and me and who never tires of the constant prayers I offer to Him. I am also so blessed to have such wonderful children. David and Mary never really mention my being sick, even though I know it is on their mind. Last week Mary woke up in the middle of the night crying. When I went in and asked her what was wrong she said she had a bad dream about a doctor coming to our house. I told her no doctor was coming to our house and calmed her down and a few minutes later she asked, “Mommy remember when your shoulder hurt and you had to go to the doctor all the time?” After she said that I was the one crying! David and Mary are so sensitive and sweet and they are so strong. They often ask how I’m feeling and they help each other stay calm and quiet each afternoon while I’m resting.
I’m always emotional the week of my scans—I can’t help it. This past Thursday David and Mary had their preschool Christmas program and one of us had to be there for them so I went to the hospital by myself while Steve was with the kids. It was a long day but I knew I wasn’t alone, with my family praying and thinking of me I felt peace and comfort.
On the way home after hearing wonderful news and receiving medicine so this horrid cough will go away I was once again overwhelmed by the blessings the Lord continues to grant me. I was listening to a radio station that plays only Christmas music and the song “Feliz Navidad” came on. I started bawling! Who cries when they hear “Feliz Navidad”? I was laughing at myself for crying to such a fun song, but each time the line “I wish you a Merry Christmas from the bottom of my heeeaarrttt” was sung I cried a little more.
I think the phrase “from the bottom of my heart” is what got me. I am so grateful to my Heavenly Father and to all of you from so far deep inside my heart for all your love and support.
I wish you a Merry Christmas from the bottom of my heart!
January 17, 2009 (Steve)
We got some bad news yesterday. Catie’s cancer has returned and has now spread to her lungs—tumors were clearly visible in yesterday’s CT scan results. We don’t know for sure what the treatment will be, but we discussed a few options with Catie’s doctors. Right now we’re still figuring things out and trying to decide the best course of action. At this point, the most likely scenario is at least another eight months of chemotherapy, with a different set of drugs this time around. Because of the location of the tumors, radiation treatment and surgical removal would be difficult. She’s scheduled for surgery one week from Tuesday to have an IV access line implanted (her last one was removed a few months ago), then she’ll start treatment soon after.
The news caught us totally off guard, but between emotional moments I admire so much the way Catie is staying calm and positive. She’s not the kind of person to let things get her down, and that has made all the difference for our family.
We will continue to provide updates as we learn more.
January 22, 2009 (Steve)
We truly appreciate all of your comments, emails, thoughts and prayers. At this point, there is not much new to share. Catie still has surgery scheduled for this coming Tuesday, when she’ll have an IV access port implanted. Then she’ll have two days to rest before starting chemotherapy on Thursday the 29th. Our doctors are recommending a combination of two drugs this time around, as opposed to the five she had the first time through. We’ve heard from a couple doctors at other hospitals who agree with this approach. We don’t have all the details yet on how the treatment will be administered, but it looks like she’ll get the drugs for five straight days every three or four weeks for several months.
There are a few things working in Catie’s favor for getting through the treatments a little more easily this time around. First, she’s not pregnant, so there’s not the additional physical stress on her body or worry about the baby’s health. Second, we’ve been through one set of treatments already, so we have a better idea of what to expect. Third, the treatment is outpatient. Although she has to go to the hospital every day for five days, she gets to see the kids and sleep in her own bed at night. Fourth, she won’t have radiation or surgery this time. Our doctors think they would add additional strain on Catie and are not likely to help in this situation. Finally, we now have three children to make us laugh and brighten each day.
Catie is still staying positive and doing remarkably well given the circumstances. I don’t expect to have any more news until next week when we head back to the hospital, but I will post again then.
January 29, 2009 (Steve)
Catie started chemotherapy today, but I’ll come back to that later. On Tuesday, she had surgery to implant a port through which her chemotherapy can be delivered. This being the third time through, she had a pretty good idea what to expect. Her first port had to be removed when the doctors took out her collar bone. The second was removed back in September after she went six months cancer free. Hopefully this will be the last.
The surgery itself took about an hour. Catie was knocked out for the procedure, but woke up at one point long enough to hear a doctor telling the resident he was stitching her up wrong. Soon after, someone (maybe a lawyer?) must have upped her meds because she was quickly back asleep. She’s still sore and in some pain, but past experience tells us that will be over soon enough.
Tuesday afternoon and all day Wednesday some generous friends took care of the kids so Catie could stay home and rest while I had to be at work. Then Wednesday night Catie’s mom drove down for a weeklong visit to take care of David, Mary, and Sarah during Catie’s first set of treatments.
This morning we met with our doctors and discussed Catie’s treatment plan. Some very kind friends have been helping us gather information about treatment options, which we discussed with our doctors at Duke. Two of the three most promising options are different versions of chemotherapy. The third is a targeted cancer treatment that is still in clinical trials. We’re going to start with one of the chemotherapy options and fall back on the others in the future if needed.
We also got more details on what Catie’s treatment will look like. During each cycle, she will receive infusions every day for five days—about six or seven hours a day. She’ll be able to come home each night this time, see the kids, and sleep in her own bed. This will be repeated every three or four weeks, depending on how she’s feeling in between.
Catie’s lungs will be tested after two cycles—about six weeks from now. If the treatment doesn’t seem to be working, we’ll look at other options. Otherwise, we’ll continue for a total of at least six cycles. If her body can handle more, they’ll give it to her.
Her treatment today was uneventful. It feels good to have started; the past two weeks was a long and anxious wait. Other than the residual effects from Tuesday’s surgery, she feels fine. And your prayers and kind words are always a great comfort to her and our family. Thank you.
February 9, 2009 (Catie)
There are many things that help me stay strong and focused during this time. I try to read, sing, think about, or talk with the things that help me to be strong the moment I feel myself becoming weak. I cannot afford to be weak. I know I must be strong physically, emotionally and most important spiritually in order to fight and beat this cancer. I’d like to share some of the things that help me:
• The fourth verse of a primary song my children sing, “If the Savior Stood Beside Me”:
“He is always near me, though I do not see Him there
And because He loves me dearly, I am in His watchful care
So I’ll be the kind of person that I know I’d like to be
If I could see the Savior standing nigh, watching over me.”
I know the Savior is watching over me, without a doubt, and singing this song brings great peace to me.
• The first verse of a favorite hymn of mine, “Be Still My Soul”:
“Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev’ry change he faithful will remain.
Be still, my soul: Thy best, thy heav’nly Friend
Thru thorny ways leads to a joyful end.”
I know that the Lord is on my side. I also know that through great challenges come great blessings. Reading this hymn reminds me of this.
• There is a poem titled, “The Oak Tree” by Johnny Ray Ryder Jr. that a lady whom I’ve never met, but that heard of my situation, sent to me. I absolutely love it.
A mighty wind blew night and day
It stole the oak tree’s leaves away
Then snapped its boughs and pulled its bark
Until the oak was tired and stark
But still the oak tree held its ground
While other trees fell all around
The weary wind gave up and spoke.
How can you still be standing Oak?
The oak tree said, I know that you
Can break each branch of mine in two
Carry every leaf away
Shake my limbs, and make me sway
But I have roots stretched in the earth
Growing stronger since my birth
You’ll never touch them, for you see
They are the deepest part of me
Until today, I wasn’t sure
Of just how much I could endure
But now I’ve found, with thanks to you
I’m stronger than I ever knew.
Every time I read this tears come to my eyes. I feel that cancer is to me what the wind is to the oak tree in this poem. Sometimes I feel that I’m not very strong, but like the oak tree I have roots that stretch deep. My roots are my faith in Christ, the power of prayer, my love for my husband and children, love for my parents and entire family, the love and support I receive from them and the support I receive from all of you. With these roots strong and deep and ever growing I know I can withstand whatever this cancer tries to do.
• There are many scriptures that I love to read and reread that give me strength and peace, here are a few of my favorites:
- “Be still and know that I am God.” Psalms 46:10
- “I can do all things through Christ which strengtheneth me.” Philippians 4:13
- “Yea, and how is it that ye have forgotten that the Lord is able to do all things according to his will, for the children of men, if it so be that they exercise faith in him? Wherefore, let us be faithful to him.” 1 Nephi 7:12
- “The Lord shall fight for you, and ye shall hold your peace.” Exodus 14:14
- “Thus God has provided a means that man, through faith, might work mighty miracles.” Mosiah 8:18
• All of the sweet notes and supportive words that each of you shares boost me so much! Your kindness, support, love, and friendship are truly overwhelming. I am most grateful for your prayers. The power of our combined prayers is already playing a tremendous role in my fight.
• The love and support that my family gives to me is so wonderful. My siblings are so loving and supportive. The prayers and testimonies of them and their families help me so much. I’m so grateful for such wonderful brothers and sisters.
• The love and support my mother and father give to me is absolutely unreal. I always knew they loved me and cared for me and would do anything for me, but through this experience I have come to realize the depth and intensity of their love. I am so grateful for them. I have always admired them both so much. My mom has spent the past week with us, taking care of us and lifting me up. She will never know the strength and example she is to me.
• My family provides me with such focus. I love Steve, David, Mary and Sarah so much. So many people comment on how sad and difficult it must be to go through this while my children are so young. I think this sometimes as well, but then knowing the Lord knows me better than myself I have realized that it is my children who make me want to fight harder and longer, it is they who give me a purpose to get up and smile and live each and every day, it is they who make me laugh, it is they who make me happy, it is they who help to occupy my mind and thoughts. While I hope and pray everyday that this experience does not negatively impact them, I am so grateful they are at the stages of life they are and for the strength and focus they give to me.
• Then comes Steve—I can’t imagine how Steve feels right now. He continues, though, to be strong, faithful, focused, smart and funny. He takes good care of me, emailing the doctors, asking questions, picking up prescriptions, and making me laugh. I am so grateful for him and his continued love. We certainly had no idea this trial would come our way the day we were married, but neither of us would change anything. I know we will be together forever. From the day I met him Steve’s humor won me over. I am so grateful he makes me laugh; I love laughing with him.
February 17, 2009 (Steve)
Catie has had a wonderful week; she is feeling great and has been able to spend a lot of time with me and the kids. In fact, she is feeling well enough that she’s going to start her next round of treatment on Thursday. Because the chemotherapy drugs also kill blood cells, Catie has to get her blood tested twice a week between treatments. When her blood counts rebound, she’s ready for the next round. Our doctor expects this will usually take about three weeks (one five-day treatment every four weeks), but this time she needed less. So Catie will be back in the hospital Thursday through Monday.
Tomorrow she has follow-up visits with her radiation oncologist and surgical oncologist. These were scheduled months ago, and are just routine check-ups of her shoulder and above her eye, where tumors were treated previously.
One final happening is that Catie’s hair, after months of nurturing and coaxing to grow, has started to fall out. I trimmed it with a #7 clipper attachment this morning, and for now we’re going to let gravity take care of the rest (at least this way the hairballs Sarah coughs up won’t be so large!). David and Mary have been helping her pick out hats to wear from her collection. Sarah just keeps making funny faces in the direction of Catie’s head. She looks great, and I’ll post a picture soon.
February 26, 2009 (Steve)
Catie made it through her second round of chemotherapy and is still feeling well. In fact, she’s feeling better now than she was at the same point the first time through chemo a year and a half ago. She’s been tired but that’s about it, aside from the hair thing (I posted a couple new pictures). We had a laugh because after most of her hair fell out it took a lint roller to finish the job.
So for now, as long as she recovers from this latest treatment in time, she’ll be back in the hospital for five more days starting March 12. March 11 will be a bigger day for us, because she’ll have some tests done (including a CT scan of her lungs) that will let us know if the current treatment is working. If it is, then we’ll continue the same treatment for a couple more months. If not, we’ll switch to something else. There’s one other type of chemotherapy (different set of drugs) and a couple other options we can try. The days leading up to March 11 will be a nervous time for Catie, and I know she’ll appreciate your thoughts and prayers. Your notes and comments mean a lot to her and she checks the site often. Thank you!
March 5, 2009 (Steve)
We found out today that Catie’s blood counts have rebounded, with the help of a shot I give her after each treatment (I thought gas was expensive but this stuff costs $3,200 per mL dose—fortunately our insurance picks up most of that). We learned on Monday after her regular bi-weekly blood test that her white blood cell count was dangerously low and she had to be especially careful to avoid any infection. This is called neutropenia, which means her immune system is severely weakened and is one of the most common side effects of chemotherapy.
These blood test results also mean she can relax a little this weekend and enjoy spending time with a group of friends from college who are coming to visit. It also means that her treatment will probably stay on schedule to resume a week from today.
I’ll post again after Catie’s tests next Wednesday (the lung CT scan and bone scan). We continue to be so thankful for all your thoughts and prayers.
March 11, 2009 (Steve)
Great news! Both Catie’s tests came back positive (the good kind of positive). This is a HUGE relief and means her current chemotherapy treatment (topotecan and cyclophosphamide) is working. As a result, we’re planning on finishing out the remaining four to six cycles, which will probably continue through June or July.
The first test was a CT scan of Catie’s lungs. Her doctors identified several tumors in both lungs back in January. We will see the scans in person tomorrow, but over the phone our doctor told us they have decreased in size. Given the treatment’s success so far, we’re hoping that over the coming months the drugs will finish them off.
The second test was a bone scan, which tells us if the cancer has spread to any bones in her body. Two hours before this test, Catie is injected with a radioactive dye that flows through her blood and into her bones. Areas of rapid growth (e.g., a tumor) will then light up when scanned. We’re told there was nothing unusual.
So as far as we know from the tests, the tumors are confined to Catie’s lungs and responding to treatment. This is terrific news. We knew going into today that the likelihood of this kind of response was not great, but nevertheless it is what we expected to see. Thank you all so much for your fasting and prayers. We, especially Catie, have been overwhelmed many times having learned how many people—family, friends, church members, and even some we’ve never met—have included Catie and our family in their prayers. We know this has made a real difference.
Catie will be in the hospital tomorrow through Monday (returning home at night) for her next cycle of chemotherapy. I’ll post again next week after she’s finished. Thank you!
March 15, 2009 (Catie)
I cannot thank you all enough for your fasting and prayers. I know without a doubt that “faith can move mountains.” These tumors are mountains, but our combined faith is causing these tumors to move out of my body. The chemotherapy is helping to fight this cancer, but I know with all my heart that God is blessing me because of the faith of all of you. I am just overwhelmed and wish I could express how I feel, but thank you, thank you, thank you for all of your prayers and fasting. Faith and the power of prayer are very real.
The greatest blessing that has come from this challenge is my increased testimony and knowledge of our Savior Jesus Christ. Whenever I pray or whenever I am feeling despair He comes to me, I feel Him so close and I am able to continue on fighting and doing it with peace and happiness because of Him and the comfort He gives to me. My mom and I love the song “You Raise Me Up”. When she is here taking care of us we often listen to it, it usually brings us to tears, but it is so beautiful and describes how I feel. The first verse lyrics say:
When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.
You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.
I know that our Savior is there for all of us, no matter what our challenge or trial be, no matter how big or small, no matter how personal or public, He cares and if we ask for His help and his comfort He will freely give to us. Again, thank you all so much for your continued support and prayers. I hope you each have a wonderful week.
April 3, 2009 (Catie)
I am currently undergoing my 4th round of chemotherapy. It began yesterday and will last through Monday. It has and hopefully will continue to be rather uneventful! The only thing out of the ordinary is that my blood pressure seems to be lower than normal. It is always low, but it has been lower than usual lately. So now Steve tries to say something aggravating each time the nurse checks my blood pressure in an attempt to get it to rise. It seems to be working!
Truly, I am so grateful to Steve for being here with me and supporting me along this rocky road we are traveling at the moment. He always makes me laugh and knows how to lighten the situation whenever things get a little gloomy.
I’m reading a book right now titled “Anti Cancer: A New Way of Living” by David Servan-Schreiber. It is fantastic and I recommend it to everyone. It does speak particularly to those with cancer, but much of the book applies to everyone—lifestyle habits and changes that can help our bodies to be stronger and healthier and fight against any potential disease. It is excellent.
In the beginning of the book the author states that the notion of “crisis” in Chinese is written as a combination of the two characters “danger” and “opportunity”. I love this. We all deal with crisis in our lives in some form or other, and while a crisis usually presents a danger (or discomfort of some sort) with it comes an opportunity to learn and grow. While I continue to get scared and down at times during this crisis, I also know that I have been given the opportunity to love and appreciate life and those I love more than I would or could have otherwise. For this I am so grateful.
We continue to be so very grateful for all of your love and prayers. Thank you. I hope you each have a great day and a wonderful Easter next weekend. I am so grateful for the life, atonement and resurrection of our Savior Jesus Christ. I know He lives. I love celebrating the restoration of our Savior’s life and knowing that one day we each will live again with a perfected body, which is a great comfort to me.
April 19, 2009 (Steve)
Catie has three big tests coming up this Thursday—an MRI, CT scan, and bone scan. The CT scan of her lungs is the biggest concern because as far as we know the cancer is confined to her lungs right now. Six weeks ago, after two cycles of treatment, there was some decrease in the size of the tumors, which meant the treatment was working. This week, we’re hoping and praying for a much larger decrease in size or better yet that they’re totally eliminated. The MRI of Catie’s eye will tell us if there’s any new activity around a prior tumor that was treated by radiation back in 2007. Finally, the bone scan can detect any new activity in any of her bones. The latter two tests are precautionary and we don’t expect to see anything new.
Catie also starts another five days of treatment this Thursday (Thursday will be a long day for her). This is her fifth cycle out of six to eight, depending on how the healthy parts of her body tolerate the chemotherapy. So far, she’s been feeling pretty well. Initially, her immune system was hit harder but lately she seems to be more tired than anything else. Her red blood cell counts were low the past couple weeks and she nearly needed a transfusion before they rebounded. We know it will get tougher on her as the treatment continues, but she’s been very blessed so far not to have some of the more serious side effects that others sometimes face.
I’ll post again on Thursday night or Friday morning after we learn the test results. Thank you for your continued prayers and concern.
April 23, 2009 (Steve)
We got Catie’s test results back today. The bone scan and MRI confirmed that no new tumors are visible, which was expected but still nice to know. As I said before, we were more interested to know the results from the CT scan of Catie’s lungs. It seems the tumors haven’t gotten smaller as we had hoped, but they haven’t grown larger either.
Catie’s doctor was out of town this week so we haven’t had a chance to talk about the results with him yet (we will probably on Monday), but this doesn’t seem to be bad news because the tumors aren’t spreading or growing larger. What we don’t know is how good the news is. We’re told there are two possible outcomes of successful treatment: the tumors are eliminated completely leaving no visible trace or they are killed leaving visible scarring. In the first case, the test results would indicate we still have a way to go, which is okay considering the treatment is still in progress. In the second case, the cancer could already be eliminated and the lesions we see merely represent scarring.
We won’t know which is the case anytime soon. The tentative plan is to finish out the remainder of the treatment, which will likely end in June or July. At that point, we may have some decisions to make. If there are still visible lesions, we can either wait to see if there is any new growth in the following months (or years) or maybe some or all of the lesions could be surgically removed and tested. It’s just too early to know at this point, not to mention we haven’t talked to Catie’s doctor yet.
While we were both disappointed we didn’t see conclusive, favorable test results, we both know this treatment is a long process and we can’t realistically expect only good news along the way. We still feel like Catie’s is heading down a (long and sometimes painful) path toward full recovery. The uncertainty, we’re learning, can be difficult, but when we think of the many prayers and on Catie’s behalf and the feelings we’ve had, it becomes so much easier to continue along with faith for a complete recovery.
Thank you for your prayers and kind words.
May 12, 2009 (Catie)
Tonight I got out of the house and attended David’s kindergarten orientation! I can hardly believe that David will be off to school soon. I am going to miss him! I hope he’ll miss me as much as I’m going to miss him, but I doubt it! He is more than ready for it and I’m excited for him.
I go in for treatment #6 this Thursday. With this being #6 out of 8 scheduled treatments I am definitely seeing the light at the end of the tunnel and it feels good. As you may remember I had tests and scans done before my last treatment three weeks ago. We ended up connecting with my doctors only through email about those results so after we see them this Thursday and talk with them in more depth we will write a post sharing their thoughts with all of you.
This month of May has been filled with many sunny days which make me so happy! I love the sun and am thankful for it. Steve also keeps my days sunny. He is so wonderful. I am so grateful for him. I love him so much and am so thankful for all he does for me and our children. On days that I have a hard time emotionally and mentally he hugs me and lets me cry on his shoulder and then always makes me laugh. He jokes that back before I was born I must have slept late on the day we were signing up for trials for this life, and by the time I arrived all the good ones were taken!
Of course I know that’s not how it works. We all have challenges, and each person’s trials can teach us something and help us to be better if we let them. I am so grateful for the Gospel and the knowledge that I have a loving Father in Heaven who cares about me and my family, and about each and every one of us.
Thank you for your continued love and support and friendship and most of all prayers.
May 17, 2009 (Catie)
This sixth round of chemo is going well. Four days down, one to go! Steve and I spoke with our doctors on Thursday and they seem encouraged from my last set of scans. The fact that I have responded to this treatment and that things are remaining stable is a good sign to them. I will have my scans repeated again on June 4th. I will then finish out my last two scheduled chemo treatments. I should be done by the end of June. After that the doctors will watch me closely with frequent scans and tests (every two to three months). The doctors did mention the slight possibility of some radiation treatments after my chemo is complete, but are going to collaborate more with my radiation oncologist before we make a decision.
I know we say this in every post, but we thank you each so much for your continued prayers and love. I cannot express the gratitude I feel for the prayers you offer on our behalf. Thank you.
May 28, 2009 (Catie)
There is a new video on my church’s (The Church of Jesus Christ of Latter-day Saints) website homepage that is wonderful. It brought tears to my eyes as I watched it just a few minutes ago. To see it go to www.lds.org and the video is at the bottom of the page titled, “Hope Ya Know, We Had a Hard Time”.
I am so grateful to my Savior for His life and the sacrifice He made so that my family and I do not have to carry this trial by ourselves. He is always there lifting us up. I know that none of us are alone, ever, no matter what challenge or trial we face in life. I thank each of you for your continued prayers, help, love and support. Our “hard time” has been so much easier because of all of you.
We’ll post again after my scans next Thursday, June 4th.
June 5, 2009 (Catie)
The results from my bone scan and CT of the chest are good. We have not received the final written report from the radiologist but after looking at the preliminary results yesterday afternoon my doctors were pleased. My bone scan showed no signs of any cancer which is what we hoped and anticipated and which is also consistent with previous bone scans. The CT of my chest showed, like the last chest CT, that the tumors are stable. There is no new growth of any kind. This is good news. The growths showing on the CT scan could be (and hopefully are) just scar tissue. I began treatment #7 yesterday after we received these results.
Thank you all so much for your prayers. I know without a doubt that it is because of the faith and prayers of all of you that I am being blessed. My family and I appreciate your love and prayers so much. My children bring me the greatest joy and I just want to be with them and be their mother, to love and teach them and learn from them for as long as I possibly can.
When we receive the final written report of my scans we will write another post if there is any other news to add. I should finish this treatment on Monday and then complete treatment #8 on June 27th—the day before my 30th birthday!! Being done with chemo and ready to jump back into life with my family will be the best present ever. Thank you again so much for your love and prayers.
June 27, 2009 (Catie)
Today is my last day of chemo (hopefully forever!). I started my treatment on Tuesday this week and everything has gone well. My doctors will continue to watch me closely. We will also continue to pray and hope and I will try to take as good care of myself as I can through diet and exercise. I will have scans the first week of August and we will post those results then.
Thank you each so much for your continued support and prayers. I know that God can do anything according to His will. I also know that faith can move mountains and I really believe that with all of our faith combined I will be blessed to be able to raise my children. This is my greatest desire. So I thank you so much for your faith and prayers.
The pictures I recently posted are of the Wasatch Back 2009. This is a 188 mile relay race from Logan to Park City, UT. Last summer my big brother Jamie ran in this race with some friends and just loved it. He decided we should do a family race this summer. He rallied the troops and registered near the end of last summer (it fills up quickly!). When my cancer returned in January my family decided to run in honor of me and named their team C.A.T.I.E. I have been so touched by their love and support of me during the last two years I have been battling this cancer.
I have had so much fun hearing about their training for this race and the anticipation of the race itself has been so exciting. I’m so sad that I was not able to be there to cheer them on as they ran but I have loved hearing about the race and seeing pictures from it. The original twelve members of the team were all family members, due to some last minute injuries two team members were replaced by friends. The team members on Team C.A.T.I.E. were Danny Dunn (my dad), Jamie, Andrew and Christopher Dunn (my brothers), Caroline and Elizabeth Dunn (my sisters), Jed Dunn (my cousin), Bill Oyston (my uncle), Catherine Dunn (my sister-in-law), Erin Johnson (good family friend), and two friends of my sister-in-law Marianne. I just want to thank all of them plus my mom, Aunt Martha, Uncle Mark, and sister-in-law Marianne (who each worked as volunteers for the team helping with various things) for their love and prayers and support and for this incredible tribute they made to me. I love you all!
July 25, 2009 (Steve)
We received some disappointing news yesterday. It seems Catie’s treatment was not as successful as we had hoped and the tumors in her lungs have started to grow again. We spoke with Catie’s doctors earlier today and discussed options for treatment. We are still trying to figure things out, but right now we are considering enrolling Catie in a clinical trial that is being carried out at St. Jude’s Hospital in Memphis. We’re going to try to set up a meeting in Memphis next week with the doctor running the trial to find out whether Catie will qualify and get more details. This trial involves a targeted cancer treatment—it is not chemotherapy. So hopefully we can get a better (more permanent) response with a different approach this time around.
Right now, we’re just trying to stay positive and figure out what to do next. We will be learning more about the treatment next week and will post again when we have more information.
July 29, 2009 (Steve)
The past few days have been a whirlwind. On Monday we talked to a doctor at St. Jude’s Children’s Hospital in Memphis, who was able to get approval for Catie to be admitted to their clinic. However, we were still waiting on approval from the drug company sponsoring the clinical trial. We got that on Tuesday morning then got on a plane Tuesday night and headed for Memphis (the kids are staying with Catie’s parents).
Because of delays at our stopover in Charlotte, we ended up arriving in Memphis around 1am—four hours later than scheduled. We made our way to the hospital where Catie was checked in and then examined by a doctor. We made it to our room and to sleep around 4am and rested briefly before her 9am appointment this morning.
Today, we were able to spend some time talking to the doctor in person and learned more about Catie’s treatment. Catie’s study, which is being carried out in 20 hospitals around the world, will include about 100 patients. So there are about 4 or 5 others here at St. Jude’s. We were very pleased to learn that the treatment, though it has not yet been tested on many patients, has shown some promising initial results. Also, her treatment shouldn’t be too difficult. The side effects are much less of an issue than with chemotherapy. Plus, Catie will only need to be seen once every four weeks for about two days. There are no follow up visits in between, so thankfully it will be easier to continue “life as usual” than it has been in the past. Plus, while we are in Memphis, St. Jude’s goes to great lengths to ensure all patients and their families are taken care of. This is truly an amazing place.
Just for this first visit, Catie will have to stay a few extra days. They’re running extensive tests today and tomorrow, and then if everything is in order (which we hope and expect to be the case), she’ll be able to start treatment on Friday. She’ll finish on Saturday then stick around for a couple days to be monitored for any adverse reactions. We’re hoping Catie will be able to return home on Monday night. Normally, patients would stay at the hospital for the entire first month, but given Catie’s situation with kids at home the doctor is going to let her go home next week as long as she’s feeling good.
We’ll post again in a couple days. Thank you for your thoughts, continued prayers, and kind words.
August 5, 2009 (Steve)
This update is a couple days overdue. Catie was able to get her first treatment at St. Jude’s and is now back at home and feeling well. She had extensive tests done on Thursday and Friday to ensure there were no other health issues that might disqualify her from the study. By Friday afternoon everything looked good (except the obvious) so she started treatment Friday night.
Catie is receiving a targeted cancer treatment, which many seem to think will be the next big step in the evolution in the treatment of cancer. Instead of being injected with toxic chemicals (chemotherapy) that affect normal and cancer cells alike, antibodies are introduced that block the growth and spread of cancer by interfering with specific proteins in the cancer cells. Catie’s particular treatment (CP-751,871) attempts to inhibit the signaling pathway of the protein IGF-1, which has been found to be active in Ewing’s sarcoma tumors.
Catie entered a Phase II trial conducted by Pfizer. We don’t have a lot of information on the Phase I results, but we do know the number of Ewing’s sarcoma patients was small (only 9) and that it’s too early to know what the longer-term results will be. However, sometimes having less information makes it easier to hope for the best. As long as the treatment is working, she’ll stay on the trial for one year, and possibly continue with the treatment off trial after that. The treatment takes only one day every four weeks, and Catie will be tested for progress every eight weeks. So by late September we’ll have our first indication as to whether and how much the treatment has helped.
After finishing on Saturday, Catie’s doctor kept her through Monday to make sure there were no adverse reactions. She was feeling great, so she was able to return home later that night. The two of us will head back to Memphis in about three weeks, and there will likely not be much news before then. I’ll post again after the next treatment.
August 27, 2009 (Steve)
Catie finished her second treatment late yesterday night, and she and I returned home from Memphis earlier this evening. She is tired but otherwise feeling well.
The two of us flew out to Memphis Tuesday evening while the kids stayed with a combination of very kind family and neighborhood friends. Catie’s day of treatment (Wednesday) started as usual with blood tests and vital signs. Normally, the blood test results would be fine so we’d visit briefly with the doctor then head down the hall to get started on treatment. However, one of the measurements from her blood test was abnormally high, so the doctor held off on treatment and ordered an EKG and echocardiogram (because high levels of BNP could indicate heart problems). After those came back clear, we made our way to the treatment area, just a few hours late.
The treatment takes about 4 hours or so once the medicine is ready from the pharmacy. After getting checked in and waiting for the drugs to arrive, the nurse hooks up Catie to an IV and first delivers anti-nausea medicine. Once that is completed, the antibody treatment is delivered (also by IV) for 2.5 hours, then the IV is removed and Catie is monitored 1 additional hour for potential side effects. Everything went fine.
We finished by about 10:30pm then returned to our hotel room for some rest before our flight earlier today. We’ll be back in Memphis in four weeks for a longer visit—this time with 2 MRIs, a CT scan, and a bone scan (in addition to the regular treatment). These tests will be our first indication of how well the new treatment is working, so obviously we’re hoping and praying for some good news. We don’t expect to learn anything else before then, but of course I will post here if we do.
September 24, 2009 (Steve)
We’ve been in Memphis at St. Jude’s the past couple days where Catie got a broad set of scans and tests. Unfortunately, it is clear this new treatment is not working. The tumors that were in her lungs have continued to grow and there are now new tumors in her lungs and also on her hip bone. The latter we suspected because Catie has had pain and some trouble walking that has been increasing over the past four weeks.
After seeing the results, Catie’s doctor decided to take her off the trial and cancelled the treatment that was scheduled for last night. We’re leaving for home this morning and don’t plan to return to Memphis. Instead, we’ll go back to Duke and continue treatment with the doctors there. We hope to connect with the doctors early next week, and we’ll try to quickly work out a treatment plan. There is one more chemotherapy option we’re aware of, so she’ll likely get that plus radiation on her hip. I’ll post more information next week as we find it out.
Even though this next treatment option is probably the least promising, we’re trying to remember that it is just as easy for God to perform a miracle now as it would have been two years ago—even though things seems worse there is still hope.
September 29, 2009 (Steve)
We want to thank you all so much for your thoughts and prayers. We read and continue to re-read your comments and they are always uplifting and strengthening, especially for Catie.
We met with Catie’s radiation oncologist yesterday to talk about potential radiation treatments, and we decided to proceed with chemotherapy and hold off on radiation for the time being. One option was whole-lung radiation, but the doctor doesn’t think that would be a good idea in this case because the cancer has already spread beyond her lungs. Targeting the lungs would have severe side effects (her heart and other central organs would be affected) and it wouldn’t treat the cancer outside her lungs. Another option was to radiate Catie’s hip, which could help alleviate some of pain she’s been feeling. However, because the side effects of radiation and the chemotherapy she’ll be getting are similar, it would be too much to handle at once. We decided to start chemotherapy first (which fights cancer throughout the body), and we could come back to radiation (targeting the hip) later if necessary.
We’ll meet with Catie’s primary oncologist on Friday and hope to start treatment the same day. Back in July we discussed two potential treatment plans. We tried the one at St. Jude’s knowing we still had one more chemotherapy option (Irinotecan & Temozolomide) if that didn’t work. Catie’s doctor at St. Jude’s had the same recommendation. We’ve asked about high-dose chemotherapy with stem cell transplantation in the past and will ask again on Friday. Our doctor has pointed to research suggesting this increases side effects without improving outcomes but at this point we’re open for just about anything.
We’ll get treatment details on Friday, but from what we understand about the expected treatment, the drugs will be administered 10 out of every 21 days. Also, the treatment is outpatient, so fortunately she won’t be staying at the hospital overnight. I’ll post again this weekend with an update on the treatment.
October 3, 2009 (Steve)
We met with the doctors yesterday and Catie started a new treatment as expected. Yesterday made for a long day, we were both exhausted by the end (and I don’t even have cancer). We arrived at the hospital early yesterday morning and the visit started as usual with a check of Catie’s height and weight. Because she’s treated in a children’s hospital, Catie’s height is checked each visit (sometimes more than once per day—I have tried to explain that at Catie’s age height measurements are no longer necessary, but apparently they have a procedure to follow and Catie elbows me in the ribs every time I start to bring it up). They also start an IV and get blood samples for testing. The blood tests are partly to assess the effects of the cancer and prior treatments and partly to determine whether she is qualified to receive new treatment. Chemotherapy and radiation suppress the production of healthy blood cells and at a certain point that becomes as dangerous as the cancer itself. Although Catie’s blood counts during treatment have been consistently low, she has been fortunate not to have faced severely low levels very often.
Later yesterday morning we met with Catie’s doctor and discussed treatments. Not many people get Ewing’s sarcoma (less than 200 per year in the US) and not too many of those have been through three failed treatments, so we’re in a place where there’s not a whole lot of information on which to base treatment decisions. In the past, aggressive therapies have included higher doses of or more toxic forms of chemotherapy, often followed by stem cell replacement to repair the damage to the body’s ability to produce healthy blood cells. Instead, Catie started a newer alternative that has been gaining in popularity and has similar response rates with lesser immediate and longer-term side effects. This is also administered on an outpatient basis, so she’ll be home each night rather than being kept in the hospital for weeks at a time.
Catie’s treatment combines Temozolomide (a pill taken orally) and Irinotecan (infused by IV over one hour). The IV starts one hour after the pill is taken. She repeats the dose 10 days out of every 21—Friday through Tuesday the first week, Friday through Tuesday the second week, and a break the third week. We originally thought she could take the pill at home and have a one-hour hospital stay, but it now looks like she’ll have to take the pill at the hospital, meaning her stay will be a little over two hours. She also has a list of other medications to combat some of the side effects of the cancer and treatment.
Yesterday’s treatment was uneventful. Physically, Catie is feeling kind of lousy right now, but that’s due to the cancer itself—the chemotherapy hasn’t started to affect her yet. We’ll be back at the hospital again this afternoon.
Again, Catie and I want to thank you for all the thoughtful and inspirational comments you have left. It means so much to us knowing you are thinking about us and praying for our family.
October 10, 2009 (Steve)
We continue to appreciate all of your prayers and notes. Now that Catie has been going through this new treatment a little, we have a better idea of how it is going to affect her. So far it could have been better. During prior treatments, Catie didn’t really experience much in the way of nausea, vomiting, or loss of appetite. This time it’s all three, which is a little worrisome because side effects tend to get worse as the treatment continues. We don’t know if it is the new drugs she’s getting or just a general weariness after over two years of treatment, but I’ll make sure she’s eating as much good food as possible and in general taking it easy.
Catie’s first five days of chemo continued through Tuesday, and then she had Wednesday and Thursday off. On Wednesday, however, she went in for a previously scheduled MRI of her pelvis. A bone scan at St. Jude’s indicated cancer growth on her hip, but a more precise MRI was scheduled as a follow up to more clearly detect the extent of the disease in that area. Unfortunately, it was more extensive than we had hoped. Regardless, we’re counting on a miracle, so in that sense I guess it doesn’t matter where it is or how much is there.
Catie was back at the hospital yesterday and today, and will continue through Tuesday. Then she’ll have a week off and that will be the end of the first “cycle” of treatment. After the second cycle—in four or five weeks—she’ll have scans done to determine what effect the new treatment is having.
We’re starting to work out the routine (with help from family and friends), and our kids have been amazing. They are always easy going, and this has been no exception. I think Catie is a big part of that, because despite any pain or discomfort she is feeling she continues to spend time with and take care of them—with a smile, of course. I’ll post another update on how Catie’s feeling in a week or two.
October 24, 2009 (Steve)
We met with the doctor yesterday and Catie started the next round of treatments. We decided to increase the chemotherapy dosage this time. There’s always a tradeoff between the efficacy of the treatment and potentially dangerous side effects, but we thought it made sense to go with a higher dose this time. Catie felt pretty sick at the end of her treatment this morning, but it didn’t seem too much worse than last time with the lesser dose. We’ll see how things go, and we can always change back if needed.
The nine-day break from chemotherapy was nice for both of us, but the pain Catie has been feeling has been intensifying, especially the past couple days. This is a concern because, well, pain hurts, but more so because it could mean the cancer is still growing. The good news is that it did seem to let up some this afternoon—hopefully as a result of the treatment.
For now, we’re just anxiously awaiting the tests Catie will have in two and a half weeks (probably Nov. 11 and 12) that will indicate how well the chemotherapy is working. Until then we’ll just keep waiting and praying. As we wait, I’m reminded of the Bible story of Sarah (and Abraham), who waited many years to have a long-desired child. It was only after she was so old that becoming a mother seemed impossible that the Lord blessed her, but He did eventually bless her.
Thank you for your thoughts and prayers.
November 13, 2009 (Steve)
Catie had several tests done yesterday and we found out the results from her doctor earlier today. He described them as “mixed.” The lung CT scan showed improvement. Some of the tumors we saw at St. Jude’s had disappeared, but others remained. The MRI of Catie’s pelvis was less encouraging, but not bad. Things were about the same as they were six weeks ago. However, the MRI also showed some new growth at the top of her left femur.
Over the past couple weeks, the pain Catie had been feeling from the cancer fortunately has subsided. But she is still struggling with the chemotherapy’s side effects—primarily nausea, vomiting, and digestive issues. These sometimes keep her up at night and keep her lying down during the day. However, some days are better than others and at times she’s felt well enough to get out on errands, etc.
Going forward, the plan is to continue on the same treatment for at least two more three-week rounds; she started again today. After six weeks, she’ll have another set of tests and we’ll she where she stands. Even though we didn’t get the dramatic doctor-scratching-his-head-because-everything-disappeared results, there is cause for hope because the current treatment did work on at least some of the tumors. Hopefully with some more time and prayer the others will eventually cooperate.
December 7, 2009 (Steve)
My apologies for the long break between updates. The past week has been a tough one for Catie. She has been feeling pain again caused by the tumors around her hips. Then last week she came down with a fever and since then her temperature has been rising and falling. Because of this, Catie’s doctor gave her some antibiotics and decided to postpone treatment (scheduled to start last Friday) at least until this coming Friday.
For the next few days, as long as the fever doesn’t get any worse Catie will just be home resting. As long as the fever continues, she’ll stay off treatment. Because her immune system is already weak, any further treatment would just make it harder for her to fight whatever illness or infection is causing the fever. In the meantime, Catie’s mother is taking the kids to Tennessee tomorrow for a week or two. Catie has been feeling weaker than usual and needs to rest as much as possible.
Hopefully the fever will pass soon, allowing Catie to get some strength back, stop losing weight, and resume chemotherapy. We appreciate your continued prayers on her behalf. I’ll try to post another update in a week.
December 10, 2009 (Steve)
We spent today at the hospital and after hearing the doctors’ recommendation decided on a new course of action. The past couple days Catie’s pain had become unbearable (even with meds) and eventually the painkillers themselves began to have some very uncomfortable side effects. Catie’s doctor asked her to come in today and ordered an MRI. It was clear from the images and the increasing pain that the cancer is continuing to grow. As a result, she’s not going to continue on the current course of chemotherapy.
As for what’s next, there are no great options. We’ve already tried the four most promising treatments—none gave us the result we were hoping for and the most recent three had little effect at all. The combination of the cancer being more resistant and widespread and Catie’s body being weaker is a tough one, and without a good alternative the doctors are now going to shift their focus toward minimizing her discomfort. Catie starts tomorrow on two weeks of daily radiation delivered to two spots on her hips, which hopefully will shrink those tumors and allow her to sit, sleep, walk, etc., more easily. After the two weeks, we expect most of Catie’s care will be done at home. She’ll take a mild chemotherapy pill orally, which we hope will slow the cancer’s growth while causing minimal side effects. In addition, the doctor has already contacted a home health care service that will be able to take care of any day-to-day medical needs that might arise.
Of course, we were still holding out hope for this last treatment, but continuing this or some other treatment would only weaken her further leaving her susceptible to illnesses while the cancer continues to grow. After two and a half years of surgeries, chemotherapy, and radiation, it’s time to give Catie’s body a break and turn things over to the Lord. We still believe in miracles and know it’s not too late.
The kids are going to stay in Tennessee for another week, and hopefully by the time they’re back Catie will be up and walking around again. We continue to appreciate all your prayers and offers to help. We are truly blessed to have such wonderful family and friends. Thank you.
December 17, 2009 (Steve)
We have been overwhelmed by all of your support and prayers, and we could never thank you enough. I wanted to give just a quick update on how Catie is feeling. Generally speaking, she is feeling better now than she was a few days ago. First of all, Catie’s fever went away last week and whatever caused it seems to have passed. The pain in her hip and tailbone has decreased a little, possibly due to the radiation she’s been receiving daily. She is still taking pain medication, but not as much. She’s had some pain in other places (a little in her leg and lower back), but not so much that is keeps her lying down like before. She’s also pretty weak all over, and that doesn’t seem to have improved yet. She spends a good portion of each day resting, although one or two days this week she was moving around a bit. Finally, she is still struggling with her appetite and continues to lose weight.
Going forward, we’re not exactly sure what to expect. We are hopeful, however, that she will actually feel better for a while now that she has stopped the intensive chemotherapy treatments. Lately she hasn’t been nauseous, vomited, or had an upset stomach. In time, her immune system should recover somewhat from the treatments and she might start to regain energy. If the radiation is able to shrink the tumors in her hip and tailbone, she’ll be in less pain and require fewer painkillers. She is anxious to cut back on painkillers because they make her head “fuzzy” (her word) and have had the unfortunate side effect of shutting down her bladder function. That has improved some over the past couple days as she has been able to cut back on medication.
Catie will continue radiation through Tuesday. On Monday, the home health care people will make their first visit to our home, and we will start transitioning to home care. After the last radiation treatment on Tuesday, Catie doesn’t have any further visits scheduled at Duke Hospital.
With the kids coming home tomorrow and radiation ending Tuesday, we are anxious to have some family time uninterrupted by trips to the hospital—and what better time for that than Christmas. As I was reading the Christmas story today, I was struck by the star that led the wise men to the baby Jesus. I immediately thought of you all—our family and friends—who have been “stars” that have directed Catie’s and my thoughts and hearts toward the Lord as you have so generously shared with us your faith, hope, prayers, and love. Thank you, and Merry Christmas.
December 28, 2009 (Steve)
We hope each of you had a wonderful Christmas. We were very fortunate that Catie was able to make the drive to Tennessee to spend the holidays with her family—all of her siblings were able to make it back to her parents’ home to be together for Christmas. Earlier last week we were worried that we wouldn’t be able to make the trip. As the radiation treatment continued, some serious side effects began to develop. Because the radiation was directed at her midsection, by Monday she was either in or on her way to the bathroom the entire day. That, coupled with stomach pain, discomfort, and dehydration, became very difficult so we decided to cancel the last radiation treatment scheduled for the following day. Her doctor also had her return to the hospital Monday night to receive IV fluids for the dehydration.
We had planned to leave for Tennessee on Tuesday after her final treatment, but those plans were a little premature because we didn’t anticipate the side effects Catie was facing. She was feeling a little better on Wednesday so we decided to go ahead and make the four-hour drive. Although she spent the four days in Tennessee either lying on the couch, in the bathroom, or in bed, Catie was delighted to be with her family and we had a wonderful Christmas.
We were hoping for a quick recovery from the radiation’s side effects, but we are still waiting. Because Catie’s condition didn’t improve while we were in Tennessee, we decided to leave the kids there for another week. They will be able to play with their cousins, Catie will be able to rest more at home, and I’ll be able to take care of Catie and try to get some work done.
With Catie’s radiation treatment completed, she has now transitioned to hospice care at home. Under hospice care, she’ll no longer receive any treatments for the cancer or diagnostic tests at the hospital. However, she’ll have a nurse visit regularly at our home and have 24/7 access to on-call nurses and staff.
Right now, Catie’s feeling fatigued, which is due to the cancer, the treatments, and her waking up several times each night. She’s also in some pain from the tumors, but keeps that fairly well under control with medication. She has the upset stomach because of the radiation, and doesn’t have much of an appetite. We’re hoping and praying now that she’s off radiation and chemotherapy that some of her strength will return and her stomach settle down, allowing her to eat more and gain additional strength. Of course, it is never fast enough (i.e., immediate), but Catie is still fighting hard and staying positive.
We wish you all a very happy new year!
January 12, 2010 (Steve)
Catie continues to hang in there despite not feeling too well physically. Overall, she’s been feeling about as well as she has for the past week or two—in some ways she’s feeling better and in other ways she’s doing a little worse.
First the good news. Catie’s stomach has finally settled down from the effects of radiation. This has allowed her to eat more easily and sleep without having to get up every hour or two. However, her biggest struggle right now is probably fatigue. She still has to spend almost the entire day on the couch. Walking around is difficult and even sitting up for more than a half hour or so can be very tiring. She’s keeping the pain under control with medication. Although the area that was radiated has felt better, there are a few other places that have started cause her some trouble. Our other concern, which is related to her fatigue, is her weight. She still has almost no appetite and finds it difficult to eat more than a little at a time. Her weight dropped to 91 pounds a few days ago, but has since risen by a pound or two as she has been eating a little more lately.
Given the current situation, Catie’s mother is staying with us to help out with things at home. She’s great at making sure Catie is comfortable and getting several good meals and snacks each day. Our kids are also back from Tennessee, and we spoke with David and Mary last week and explained in more detail than we had before what is happening with Catie. Of course this is not easy for them, but we are so impressed by how well they have handled all the changes and worries they are facing. We were preparing for negative behavioral changes but instead they seem to be more thoughtful and gentle toward Catie than ever before.
Going forward, Catie will continue doing everything she can to feel better. She’s eating as much as she can of a mix of high-calorie and high-nutrition foods. We also did some research and are trying an alternative medicine that may provide some benefits. Catie and I are also uplifted by your comments and prayers. I wish we could respond to each of you individually, but just know that we read and re-read each of your comments on this site. Thank you.
February 2, 2010 (Steve)
We appreciate so much the comments you all have posted on the website. Although Catie doesn’t get to the computer as much as she used to, she reads them all and is touched by your kind words.
The past couple weeks have not been any easier for her. She is still very weak and spends most of her day in bed or on the couch. Her hip and leg especially are weak and keep her from moving around too much. During the daytime, she prefers to be out on the couch so she can be close to the kids. They love being around and always gravitate toward Catie.
Catie continues to be in pain, but usually manages it with medication. Some days are worse than others so she’ll have to increase the dosage—the pain patterns are unpredictable. And she also continues to struggle with eating. Catie hardly has an appetite and sometimes gets nauseous while eating. But she continues to try to eat 4-5 small meals/snacks a day. Her weight stopped dropping, which is good, but remains low. (By the way, you may have heard of sympathy weight gain during pregnancies… I’ve found there’s no such thing as sympathy weight loss.)
Another issue that has been getting worse is Catie’s breathing. She’s had a slight wheeze in her breathing for several months that has been more noticeable the past couple weeks. The inhaler hasn’t seemed to have much effect other than to make her heart race. Then the past week or so her breathing has been noticeably difficult in the mornings. So today we got an oxygen concentrator that she will start using while she sleeps and when she first wakes up. We’re hoping that might also give her a little more energy during the day.
As I just re-read what I’ve written so far, I realized it may not sound overly positive. But despite all that’s going on physically, I think the most positive and comforting thing I’ve witnessed is the way Catie handles herself, her emotions, and her faith now and throughout the entire time—soon to be three years—that she’s been dealing with cancer. I was going through pictures recently and was amazed by her brightness and wonderful smile, even during the most difficult times of her treatment. So I decided to put together a slideshow of her life so far since I’ve know her, and I posted it on this site in case you have 10-15 minutes to spare. I thought it might be nice for old friends who knew Catie B.C. (before cancer) to see her now, and new friends who only know Catie A.D. (after diagnosis) to get to know her a little more. To me, the two things that stand out most are her the joy she exudes and the love she so clearly has for her children.
Thanks again for all your support, and I’ll try to post again in the next couple weeks when we have more news to share.
February 13, 2010 (Steve)
Catie has not been feeling well this week. Her energy had been gradually declining through last week, then suddenly on Saturday afternoon she lost pretty much all her strength—she could no longer stand on her own. Sunday morning we couldn’t wake her up and she was nonresponsive for the most part. She couldn’t hear well and when she tried to talk it didn’t always make sense. Finally around 2pm she was carried to the bathroom then back to bed. She never got up and barely ate all day.
We were very worried on Sunday but then on Monday she was doing a little better. She woke up on her own and talked to the kids from her bed before school. She also ate a little better, but she’s still as weak as ever and is getting oxygen all day. That’s continued through today plus she’s been in more pain, especially around her legs, hips, and lower back. Her breathing has been labored for some time, and this week it seems worse. Her nurse came by yesterday and indicated the cancer in her lungs had decreased her lung capacity.
We got Catie a hospital bed that’s set up in our bedroom, and I don’t expect her to get out of it much for the foreseeable future. However, she’s making the best of it and the kids have been spending time with her there.
Despite all that’s going on with Catie, the kids seem to be handling things fairly well. None of them have started to act out or express frustration about the changes that have taken place around our home. Sarah is still young enough that she doesn’t really understand what is going on. She did struggle with having her dad and grandmother start to do things for her that her mom used to do, but she seems to have adjusted now. Mary is coping as well. In the past she’s had bad dreams about doctors or Catie’s health, and she was especially troubled when Catie lost her hair, but now she seems to be doing okay. Catie’s hair has now fallen out again (for the third time, probably a delayed response to past treatments), but it hasn’t seemed to faze Mary.
David has been especially sensitive to Catie. He hugs her frequently and very gently, and constantly tells her how much he loves her. We found out that David, without any prompting, has been praying for Catie each night in his room after we put him to bed. He also reminds Mary to do the same. He also tries to find ways to help Catie whenever he can. When we told him last month for the first time that Catie’s treatment wasn’t working, his first response was to ask whether there were any other hospitals we could try. After we told him that we had been to two hospitals and talked to several doctors all over the country, he suggested we try one in Russia. I explained that doctors all over the world share the same information about treatments, and David replied that maybe then we should try an “animal doctor,” because maybe they’ve thought of things that “people doctors” haven’t.
David is also careful not to say things that might worry Catie. Earlier this week, Catie’s ankles became swollen, and David apparently noticed but didn’t say anything. A couple days later the swelling had gone down, and only then did he finally speak up. He told Catie her ankles didn’t look as big as they did the day before, and he told her he was worried the day before that they were going to explode.
We are thankful for wonderful children that have been so patient and understanding as their life has been affected in so many ways over the past couple years. This is a bit of the positive attitude I admire so much about Catie that I think has rubbed off on them.
February 19, 2010 (Steve)
We continue to truly appreciate your concern and thoughtful comments. Catie hasn’t been able to check the site lately, but I’ve read to her each of your comments and she continues to be touched by your kindness.
This past week, Catie’s health has continued to decline generally but has also become more volatile. At times she is sitting up, eating, and talking, while at other times she loses awareness and struggles to breathe. We had a couple scares this week, the first of which occurred on Tuesday night.
Leading up to Tuesday, Catie’s cough had gotten so bad it was keeping her up day and night. On Sunday and Monday nights she continued a cycle of dozing off only to be wakened by the cough. By Monday night she was so exhausted she began hallucinating in the middle of the night. Tuesday afternoon Catie’s cough had settled down and she finally fell asleep for about three hours. However, she woke up around 6:30pm panicked and disoriented. We tried to calm her down as her breathing became more and more difficult. Her condition worsened over the next five hours before her breathing unexpectedly settled down around midnight. She was able to sleep for two three-hour stretches that night and was feeling a little better the next morning.
Catie’s breathing tends to worsen at night. We’ve tried various treatments, but none of them seem to have had a great effect. Catie still has no appetite and continues to struggle eating. Her not eating much, not sleeping well, difficultly breathing, along with all the past cancer treatments and the cancer itself, have combined to really take the strength out of her. But she is taking things in stride, and has even said this week several of the funniest things I can remember coming from her. For example, on Wednesday morning we were talking a little about what happened the previous night. Catie didn’t remember much, but did remember thinking it was her time to pass on. “I guess someone cut in line,” was her explanation for still being here. She also hasn’t lost her smile. I posted our most recent family picture from a couple days ago.
February 22, 2010 (Steve)
Catie passed away early this morning after a long night of breathing difficulties. We are planning a viewing and funeral this Friday morning in Apex, NC, followed by a burial on Saturday at a family cemetery near Cookeville, TN. I will post more details by tomorrow when the plans are finalized.
Wednesday, August 11, 2010
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