Monday, December 28, 2009

Home Again

Picture quality not the best, but the kleenex up the nose cracks me up.

Amanda came home this afternoon. She looked pretty miserable yesterday afternoon, but started perking up in the evening. The fluids and antibiotics seemed to kick in. She's still on the IV meds. We're happy to have them at home rather than in the hospital now that she is past the worst of it. She's still coughing a lot, but is happy and acting more like herself. It will be several more days of rest and recovery to get her blood counts back up. She'll start chemo again once she bounces back. We're glad it was only three days at Primary's.

Sunday, December 27, 2009

Virtue and Vice

I'm very glad that Amanda is in the hospital. I am much less worried now that she's here. She has been diagnosed with croup. It fortunately has not turned into pneumonia. That was our biggest concern. She was admitted because her immune system was dangerously low and she likely would have developed a serious bacterial infection. She's been taken off her chemotherapy and already her immune system is inching back up. The doctor thinks we can be released tomorrow. She'll be wiped out for a while. Scott stayed the night with her and he said she only slept one hour. She finally fell asleep on my shift. Erin has the same crud, but fortunately Will is OK. Caring for two sick kids and a nursing baby has it's challenges. But being here reminds me that the last time was much harder and that handling this is much easier now. Amanda picked up the bug from school. I don't want to send her back. But as my brother-in-law pointed out, I can't keep her in a bubble forever. Amanda is just too social, and she has been so much happier since she went back to school. A couple days of misery is the vice to allowing her some social freedom.

I had hoped to post a bunch of pictures about Christmas but was obviously side tracked a bit. I had this feeling that we'd end up at Primary's some time this week. I'm glad it was after Christmas and we were able to enjoy the holiday together. There are a lot of kids up here that did not get that luxury. We owe a big thank you to the mystery Santa that brought over a big bag of extra presents for our kids. It made Amanda's day. She was so excited about Christmas #2. It will give her plenty to do to keep her busy while she recuperates. We appreciate the efforts made to make her life happier and ours a little easier.

Saturday, December 26, 2009

Blessings and Trials

As I'm typing this Amanda is getting accessed and a blood draw at the ER here at Primary's. Its the day after Christmas and we weren't able to make it through the holidays without an extra trip to the hospital. As we've looked back over this year we've been looking more forward to having it behind us. Amanda is being very brave having to go through this experience yet again. It is another reminder of how blessed we have been during our trials this year. She has a bad cold and a fever. A good round of fluids and antibiotics should do the trick. That and a lot of nintendo gaming with dad.

Update. It looks like we'll be staying the night here. Not where anyone wants to spend their Christmas time off but at least we know Amanda will be watched over.

Another update. These cool new phones that Mary Ann got us allow us to update the blog from the hospital. Unfortunately we can't text or call from the super dead zone of cell service. Teri gets a cookie for responding the fatsest. Wow.

Sunday, December 13, 2009

ANSWERS





"I've got my hands on a miracle, and there's no way that you take it away."
- Foo Fighters

Amanda is settling down a bit and her health is fortunately very good right now. I suppose I should take a moment and divert attention from her to finalize the chapter to Will's health.

We finally have answers. We have known for a while, but wanted the chance to update our family first as he tested positive for a genetic condition that many other family members will test positive for as well. The condition is called Factor V Leiden. My first impression was, "huh?" Never heard of it, and yet, it's the most common genetic blood condition among Caucasians. It's a blood clotting disorder. The proteins in his blood do not function properly and are about 10 times more likely to clot than the normal population. It's a dominant Gene. Scott tested positive for it, Amanda tested positive for it, one of Scott's parents has it........you get the idea. It also explains why Amanda's port gets clotted so frequently and can be tricky to access.

Will inherited the mutated gene and developed a blood clot in his portal vein near his liver. Apparently fetus' are very high risk to clot with this condition. Tossing a mom with hyperemesis into the mix did not help. I always felt that my poor health contributed to his. It will never be proven, but I will always believe that. The clot cut off necessary circulation for him to grow properly and caused the umbilical cord to be abnormally long. This in turn strained his heart and caused it to enlarge. The enlarged heart strained his organs which decreased his amniotic fluid. The combination of the two are what nearly took his life. At some point the circulation improved.

Overall, the lack of blood supply and strain on his body caused his pancreas and liver to not have adequate reserves to function on their own when he was born. They are now working properly, his heart is healthy, and the clot is nearly gone. He's developing just like he should, just at a smaller size. We are so relieved to have answers and to have him alive. Factor V Leiden can be a very manageable health condition once you know you have it. The prognosis is very good.

There you have it. He is a miracle. I will forever believe that the prayers of many are what spared his life. He is meant to be a part of our family. I've started to realize lately that God hasn't taken many of our families challenges away despite a lot of asking. Instead, he's given us a great gift to help take our mind off hardships. When Will's health was poor every night I would pray to God and say, "Thy will be done." Hence his name. Our prayers were answered and God's Will is here!!!

Friday, December 11, 2009

Ahhhhh - I hate steroids

As a mom, a quick venting session is needed. Steroids are no fun. I was told she'd be a little ornery for a few days a month during maintenance. That's an understatement! Its more like five torturous days involving a minimum of two hours a day of tantruming, three hours a day of moping, one hour of clinging, lots of whining, and going to school as an angel. And that's if we can get to school without everybody coming unglued as her yelling sets off Erin's. Amanda keeps telling me that she thinks she's on Santa's bad list because she's cried so much during treatment. Pretty heartbreaking. But if you saw one of her tantrums you might understand her logic. If she feels well enough tomorrow we'll let her visit him to clear things up.

I wanted to post a picture depicting all this drama but couldn't capture the moment in time. Amanda was screaming right next to Will and Erin was covering Will's ears to try and protect him. Here's the irony; he has ear infections and when I told Amanda about it she said that Erin's screaming must have caused it.

Friday, December 4, 2009

BIG DAY


"It's not having what you want. It's wanting what you've got."
- Sheryl Crow

Amanda began school on Tuesday. After 8 long months she's finally back at school. Yeah!!!!
We arranged for her favorite Child Life Specialist from Primary's to come and do a presentation on cancer. The staff at Primary's are so good at what they do. Rachelle presented questions and information that I never would have thought of. Thank you Rachelle!!! Amanda showed off her colors of courage (the necklace she's wearing). Each bead represents a part of cancer treatment that she's completed. It really helps put into perspective how much she's done. Amanda's classmates were so responsive and curious. They are smart enough to understand what cancer is and young enough to be very non-judgemental. It's a great combination. Amanda was treated like a celebrity. The girls swarmed her at recess and all wanted to be her friend. However, she did come home and have a HUGE tantrum that lasted about an hour. I supposed she needed to decompress some stress. But since then she's been very happy and acting like herself again. School is wearing her out. We've had to up her bedtime and I still struggle to get her up in the morning. But she's sleeping better, which is a nice change. As a parent the adjustment has been hard. To go from total germ control and total care and now to send her to a place where I'm not there and kids eat their boogers gives me really bad vibes. But her teacher is awesome and is trying to follow all of the hand-washing and crowd avoidance protocols. Ironically, Erin and I have been really sick with a cold. Amanda's stayed healthy. She may fair better than expected. Regardless, seeing her so happy is making the risk worth it. She's finally where she wants to be.








Saturday, November 28, 2009

Big sigh of relief

Phew. We're done with last night's methotrexate dosing and Amanda actually did great - no headache or vomiting. I'm pleasantly surprised and hope that it stays that way. She's feeling great today and didn't wake up at all in the night (wish I could say the same for the other two). We may just get through this maintenance phase after all. My brain is a bit scattered lately, so I've got to jot down the RX recipe to remember for next week.

4:00 - start with lots of fluids

5:30 pm: 6-mp medication and Prevacid on empty stomach

6:00 pm: consumption of waffles or other bland food item (shouldn't be hard with my cooking lately)

8:00 pm: one Benadryl and one Zofran

8:30 pm: full dose (don't skimp) of Oxycodone and a small bowl of cereal.

9:30 pm: 8 Methotrexate pills

9:45 pm: listen to Amanda talk non-stop (narcotics bring out the social side to her)

10:00 pm: a good night's sleep for her - hopefully!

We'll see if that works again next week.

Friday, November 27, 2009

Giving and Receiving

Our ward dropped off a pumpkin pie this week. I had to chuckle because last year I was relief society president and sat on the committee that decided who got the pies. Life can change rather quickly. I was grateful to be on the receiving end. Amanda had been begging me to make a pumpkin pie all week and I've been very preoccupied with setting up my upcoming business venture. Baking pies is low on the priority list right now. I am grateful for those that think of us, pray for us, and go out of their way to support us.

I'm typing this to relieve some anxiety. Amanda will take her Methotrexate within the hour. She takes it each Friday night. Last week was awful. She cried, vomited, and whimpered in her sleep until the dose wore off. Days like this I hate cancer. The worry and dread is almost as bad as dealing with side-effects. We'll try regulating some medications to knock her out so she doesn't notice. For the first time she is apprehensive about taking pills because of how they make her feel. I hope we can help her to be more comfortable or it's going to be a very long two years. But I'm coming to accept that cancer is full of a lot of uncomfortable things that you just have to toughen up and get used to.

Thursday, November 19, 2009

Transitions


A few years ago I worked with foster children, specifically between the transition of an abusive home to a foster home. Almost consistently among abused children there is a phenomenon. They get into a safe "normal" place, and yet they try to disrupt everything that is safe and normal about it. Lately I feel a strange sense of understanding this. I took the kids on some errands today. Something that we all do regularly and think nothing of it, right? It felt very strange. I haven't done it for almost a year. I've either been too ill to go or have needed a babysitter. I felt like we belonged back at home, the hospital, among medical equipment, just somewhere other than normal society. Although I have no desire for Amanda to have to go back through the tough first six months of treatment, I still have this feeling that it is where we are supposed to belong. I've spent the last six months focused on the intense phase of leukemia and the daily task of asking myself and God, "how do I get through this?" I could not see past November. Every minute counts so heavily during cancer. Now that we are here I find myself happier, but feeling very out of place. It's a peculiar transition. Now that we know cancer, we can never overlook it. I constantly think of those recently diagnosed or in the toughest parts of their treatments. My heart aches for them because I now know what it is like. Every time we go to Primary's I look at the windows of the oncology unit and wonder who is in our room, who is fighting the fight, who is miserable. I often hear parents of cancer survivors say, "she never complained." I can say, "boy did she ever complain! But, she easily forgot and moved on." I suppose I need to start following Amanda's example.
She will transition back to school on December 1st. She is starting to act more and more like herself again. Falling asleep without drama is still an issue, but that will just take time. She is going to emerge from this a stronger person both physically and emotionally. I can finally see it. She will go back to "normal" without any hesitation or regrets. I am eager to get there with her.

Saturday, November 14, 2009

MAINTENANCE

It's hard to believe, but we are finally here. The beloved maintenance phase of treatment. The best way to describe maintenance is to compare it to a tree. If you cut down a tree, the roots are still there and the tree will grow back, even if you can't see the tree anymore. Leukemia ALL is the same. Every test available would indicate that she is cancer free. Maintenance is a two year, steady course of mostly oral drugs that will kill all the cancer roots. Amanda began the phase on Wednesday. Everybody at clinic was cheering for her. I have to admit, deep down I wasn't. Cheering about two more years of treatment and fearing relapse for years to come doesn't seem like anything to get excited about. What there is to cheer is that her treatments are fewer and less intense. She began the course with a lumbar puncture and Ara-C instead of Methotrexate. They are going to try it for a while, but she eventually needs to go back on the medication treatment course. She was still pretty miserable for a good 24 hours and hooked up to an IV pump for a few days, but she does better on the Ara-C. We are hoping that she will tolerate the medication better when her LP's are spaced apart more. They will be every three months now. yeah!

Her hair is starting to come back in. It looks blonder than normal. Cancer treatment can permanently change the color and texture of hair, so we'll see what we get. It should not fall out anymore. She is sleeping better at night thanks to a good psychologist and some occasional benadryl. She's on steroids again. It's maddening - 5 days every month. It's going to be rough because steroids make her sooooooo MOODY!!! She is close to returning to school. We have to wait and make sure that her counts don't drop too much during the first two weeks while they regulate her medication dosing. Her counts have to stay in a therapeutic range - not too low, not too high. We are looking at having her transition back around the first of December. She can't wait! She is getting very lonely again. I want her to be out and about more, but everywhere we turn people are sick. Erin ran a fever yesterday. We cannot avoid it despite our best efforts. Loneliness verses illness - it's going to be a long two year battle!

Friday, November 6, 2009

HAVING FUN AND WORKING HARD

I think our family had the best Halloween ever. Amanda wanted to be a superhero (which I thought was so cute and appropriate), but we couldn't find a costume that fit in time. Being a cat of some kind is always a favorite for her. She skipped around the neighborhood faster than we could keep up and she was surrounded by friends and family. It was so great to have her so happy!!!


Clinic was postponed this week because she didn't make counts - barely. We are all eager to have her return to school, so this is frustrating. But we need her well enough to be able to start her final treatment round. We took advantage of meeting with the psychologist. He thinks she's doing really well despite sleep problems and a whole lot of mood swings. As he put it, she's just "decompressing" from all the changes and is a very dramatic child on top of it. She really has done amazingly well. Getting poked with needles and missing school have been the worst part for her. She complains a lot when she's in pain or sick, but moves on and forgets about it when she feels better. That encourages me that she won't be too traumatized when this is all said and done. In the mean time, she is adjusting to less video game time and more homework time. Her teacher is meeting with her and assigning projects to get her up to speed with the class.

I returned to work this week. If ever there was a time to quit and stay home, it is right now. And yet, if ever there was a time to work, it's right now. I only mention work because I've had a lot of questions about my impending lay-off. I appreciate the concern. I've worked for the State of Utah for 12 years as a social worker, most of which part time in disability services. As of January, DSPD (the division I work for) is privatizing all of it's services. I am actually excited to leave and set up my own company. The struggle is that I carry the health insurance. It's not a great time to transition insurance coverage because we've been told that we have the absolute best coverage for her type of cancer. Fortunately we have other insurance options, it's just not as ideal as what we've been used to and it adds to an already long list of challenges. I am amazed at how well the timing of everything is working out for us. Sometimes so well that I have to remind myself that God gave us these challenges, but he is giving us a way to get through it. I know in a few years this transition will better our lives. Just getting there is the hard part. So if the blogging gets sparse, things are likely just fine. We're just frantically finishing our basement, getting a company put together, and still attending a lot of medical and school appointments.

Wednesday, October 28, 2009

Easter in October

"I have to admit it's getting better....." -The Beatles


We spent the weekend at my family's annual condo in the mountains trip. Amanda has been beyond excited. She even told me she'd be brave and sleep through the night there, but not at home, which she's lived up to. She had a long list of everything she planned to do with her cousins. Mission accomplished! Her most important task was the Easter egg hunt. My mom has one each spring and it was canceled several times because of Amanda's health. Don't promise Amanda anything that you don't plan to deliver because she has a very sharp memory and is very persistent at getting what was promised to her! She reminded grandma all summer about the hunt, and waiting for next year was not an option. She is finally healthy enough to be around more people, so we planned it for this weekend. It didn't take long to find all the eggs. I don't think she's even touched the candy inside. Having fun was far more important. Needless to say, she had a great weekend. She was sad to leave. I reminded her that we'll be back next year. She said, "But that's three months away!"













These eggs cashed out!

We have been surprised at what a good baby Will is. We are not used to a happy baby that you can pack around with little fuss. He's up to 7 lbs. 4 oz - at two months he's still smaller than the girls birth weight. But he's plumping up quickly. He's finally learned how to nurse (yeah!!!) which is great because the doctor's don't want him on formula. We are still waiting for genetic tests specific to blood disorders. He had another ultrasound last week and his blood clot is getting smaller. We'll follow-up in three months with the hope that it will be gone on it's own. The doctor said blood thinners will not help at this point. He finished up his "liver in a bottle" medicine and he goes to see the GI doctor next week with the hope that his liver is functioning properly. Overall, he's doing great. He looks and acts like a baby his age should. He's proving to be a delightful addition to the family. And he settles the debate - boys are EASIER than girls!!!!!

Friday, October 23, 2009

I'm living with a bunch of insomniacs!!!

I have to thank my husband and parents for helping out so much while I was busy bonding with the bathroom. Isolating myself at my parents was like a hotel stay with room service and everything. I wish I'd felt well enough to fully enjoy it. My dad made sure to double check that I hadn't separated from my husband with plans to move in. I think the effort has paid off as nobody else has gotten sick.

Being among the living again has reminded me how it was that I got so sick in the first place - a whole lot of stress and sleep deprivation. Will gets me up, but Amanda and Erin keep me up. Erin has never slept well and I'm used to her night tantrums. But Amanda has developed horrible insomnia ever since her last steroid treatment several weeks ago. She is scared of being alone. Granted, I feel for her and all she's been through, but we can't take much more of it. So Amanda and I spent over an hour talking with the oncology psychologist last week. The diagnosis is that she's "socially starved." She's not socializing enough and he wants her back in school asap, but her counts are still too low. So, it's a lot of tough love for now. She was up for over three hours the other night trying all her tricks to get somebody to stay in the room with her. As the psychologist put is, "kids are like slot machines. As soon as they know when it will pay out, they keep pulling the handle to get there." Although she is driving me batty with her attempts, she is at least feeling really good right now. The second half of her intense treatment was surprisingly manageable. She was really ornery and lethargic last week. She ended up needing a double blood transfusion. I mentally thanked whoever donated her blood. I wish they could see her bounce back to life. She's done really well since then, but her immune system continues to be dangerously low. She is officially done with her six months of intensive treatment and is now in "count recovery" mode. We'll go back the first part of November to begin her two year maintenance phase. We are hoping to have her transition back to school after that. The bad flu season is painful timing. But taking our chances will likely be the trade-off for a good night's sleep for everybody.



At least somebody's sleeping around here.

Monday, October 19, 2009

“You tried your best and failed miserably. The lesson is: never try.”

Sometimes in life it is unfortunate that you can try your best and still your best isn't good enough. It is a hard pill to swallow. We've tried very hard to all stay healthy while Amanda is going through chemo and has some of the lowest counts she's ever had. We have to be very careful during this phase as we've tried throughout the entire treatment. We sanitize everything, sometimes more than once. We don't go anywhere we don't have to and we stay away from crowds. There are few people invited over to the house and there are many restrictions about their health and who they have been around. There is a lot of flu stuff out there and we don't want any. We try and we try, but Mary Ann has found herself banned from the house yesterday.

As hard as she's tried, and she's more careful than all of us, she came down with something nasty yesterday morning. She has been so sleep deprived lately that it is no wonder. She was throwing up through the morning yesterday so she locked herself in her room until she felt well enough to pack her and Will up and take her to her parents' house. It is very hard for me, Erin, and Amanda to have Mary Ann and Will out of the house. They are handling it very well.

I am often amazed at how well both Amanda and Erin understand these things when it comes to not being able to risk getting sick. Today I took the day off and took the girls out for lunch to get them out of the house. We went to a park for a little while and had to steer clear of all other kids and only stay for a little while. The girls have been so cooped up that they need to get some air and play outside when they can. I must have gone through half a bottle of hand sanitizer following them around squirting them every 5 minutes.

After the park I talked the girls into taking a small nature walk. And I do mean small. I'm feeling very cooped up as well as it seems the only place I go is to work and back home. It felt good to get out and walk, however, you can only go as far and fast as a 3 year old will allow you. I wanted to get out and hike through the wooded area above Kaysville but soon realized that where I can tromp through the girls could not. It was a very nice warm day and I had more energy to get out than the girls. We ended just walking a little ways down a trail and the girls were collecting rocks down the path.

We are getting close to the maintenance phase of Amanda's chemo and having her get back to school and more normalcy. We have to be very careful over the next few weeks that we don't have any setbacks. Hopefully it won't be too long of a separation from Mary Ann and Will and she just has a quick bug that the rest of us can stay away from.

For those of you Simpson's fans out there, you'll recognize the quote. It is how we feel sometimes.

Thursday, October 8, 2009

HUMILITY


When Amanda was diagnosed with cancer I hoped to find another girl her age for her to meet that was going through cancer too. I knew it would help her not feel so alone. Over the past five months I've looked for that friend at clinic, but have not found her as most cancer kids are young boys and older girls. This weekend there was an obituary for a girl her age that died of liver cancer. It broke my heart. How hard it would be to go through this only to lose your child at the end. I know that Amanda's prognosis is good and we know she will survive. This was a gentle reminder for me that she is meant to be here. It has been humbling for me to recognize that it is in God's hands and that we have not one, but two children spared this year. Five months ago Will's heart was so large it took up half his chest cavity, he was supposed to have suffocated from lack of amniotic fluid, and most of his organs were under stress. How grateful I am that God still lets me hug my kids at the end of the day. Humility is hard to explain, but you recognize it when it is granted upon you.

Amanda continues with her intensive treatment. Yesterday was a long treatment day with the most medications she's had at one time. Both Scott and I thought she'd have to be carried out of the car. To our surprise she's happy, talkative, and acting like herself. She had the different medication with her lumbar puncture. We both believe she is responding much better to this medication than the last. How I wish we would have discovered this sooner. It's sad to think that her treatment was more difficult than needed, but we can't change that. I'm just grateful that she looks so good today and hope that this med continues to be better.

Wednesday, September 30, 2009

Another Week


"Stuck in a world of isolation, while the ivy grows over the door"
......pink floyd

Amanda's immune system is terribly low. Both she and Erin grow weary of being so isolated from friends and family, but it continues to be very necessary. Amanda's too suppressed to have clinic today, so we wait another week. I was looking forward to getting this next round over with. But, her body is telling us it needs a break. She is not not bouncing back as quickly and it's obvious that her body is getting tired. Having another week to build up her strength will be very good for her. That just means a lot of TV watching. I'd prefer boredom over the misery and pain of last week.
She still has some painful mouth sores. She looked like she had her wisdom teeth out she was so swollen this week. Her hair is falling out again. She continues to have mood swings and crave pickles (vlasic are the best!). She is weak and looks worn out. Our understanding of cancer is so much greater. It is something that cannot be described in a blog. Maybe it's the combination of cancer, sleep deprivation, and a newborn, but the outside world feels strangely unfamiliar right now.


Thursday, September 24, 2009

Rough Week

As a family, we have reached a nearly unbearable level of exhaustion. The combination of so much for so long and a lot of sleep deprivation is taking it's toll. I am truly grateful for family and prayer, the two things that consistently get us through the tough times.

Amanda is not doing well. She has been on a very high level of steroids this past week. She has been in a lot of pain. She started with the mouth sores, nausea, intestinal ulcers, joint pain, skin itching, insomnia, and bone pain. All of on top of the already ornery mood swings that steroids bring and a child that has a very low pain and discomfort tolerance. She is on round the clock narcotics to keep her comfortable until the steroids wear off. She's cried a lot this week. We've had help from family daily. My mom jokes that at times we really need four adults here to keep things going. It's sadly true as Amanda is proving to be far more work than her newborn brother and emotionally explosive sister combined. Amanda will have this week to recover and we're back to two weeks of intense treatment again. Her doctor decided to take her off Methotrexate and try another drug (Hooray - I hope). So perhaps she may do better. By the end of this round we will know what reaction she has to each drug. Knowing how she will react makes the next two years seem manageable. Her immune system is at it's lowest. It's interesting how quickly she declines, but how quickly she rebounds as well. We are encouraged by her doctors that she can start school after Halloween. Having this to look forward to is getting her through this last phase.

Will is up to 5 lbs. 6 oz. Gradually we are working towards a clean bill of health for him. His blood clot (officially diagnosed as a portal vein thrombosis) is getting smaller. We are doing a wait and see approach and very likely will not need to treat it. We follow up again in a month. We are still waiting for genetic testing to rule out a blood clotting disorder, but so far everything is coming back negative and doesn't appear to be a problem. The medication to detox his liver is working well, other than increased colic, and we'll follow-up with the GI doctor in a few weeks. None of the specialist doctor's we're involved with are overly concerned about his current health issues, which is great. I can tell by the decrease in medical appointments and their reactions that Will is doing well, other than being a small little guy.

Tuesday, September 15, 2009

Blogging - a luxury

It's amazing to me that after having a baby the following things are luxury items; eating, sleeping, putting on make-up, and showering. So naturally, blogging is at the bottom of the list as I would prefer to smell decent.

Amanda's health has been all over the place with this round of treatment. We have been warned that this is the hardest and most dangerous round (if she gets sick). I'm not certain that it's the hardest. She is having moments where she feels great and the IV drugs are manageable. The leg injections (which we are thankfully done with) were not pleasant and the side effects lingered. But once again, she had a terrible reaction to the methotrexate lumbar puncture. I can't describe the challenge of witnessing your child scream in uncontrollable headache pain and vomiting. I just cried. She did so well initially afterwards that we didn't follow-up with IV fluids at home. It didn't hit until the next day. I will not repeat that mistake again. Once again I am grateful for good insurance coverage and doctors that can get what's needed ordered after hours. I'm also very grateful for family, especially our mother's who are devoting so much time to helping us right now. Amanda naturally bounced back after a good round of IV anti-nausea meds, lots of IV hydration, and forbidden IB profen. I absolutely dread future lumbar punctures. We have one again in two weeks and then they are every three months. I'll talk to her ongoing doctor this week about it. But so far all the other doctors remind me that it wouldn't be wise to risk curing her cancer when they know what works. I painfully agree.

Will, in my opinion, is doing well. However, his pediatrician pointed out that he has a lot of health "quirks" going on and they concern her. We had four doctor's appointments last week between Will and Amanda, three this week, and I think two next week. It's very tiring. Fortunately primary's is working with us to try and get everything scheduled on similar days. The GI doctor wasn't very concerned about his liver, which is good. Will started on a medication to help clear out the remaining billiruben. And ironically, he has an appointment with Amanda's oncology doctor tomorrow, since she specializes in hematology as well. We will hopefully get some answers about the blood clot. He's been a bit more cranky with the meds and schedule chaos. But he's growing (up to a whole 5 lbs now) and is a great addition to our family.

Amanda's had a harder time adjusting to will being home than expected. I guess after five months of intense attention from mom her nose has been pressed in a bit. Erin, on the other hand, must have been more neglected than thought. She doesn't seem phased by the attention her brother gets. I guess it's more important to her to have a mom that is home and no longer sick. I'm still struggling to adjust to all the stress and chaos, but cannot describe what a relief it is to no longer be physically ill. Caring for a cancer patient while ill yourself was an extremely difficult challenge that I hope to never experience again.

Thursday, September 3, 2009

Better, I think....

AMANDA; Today started Delayed Intensification - round 4 of 5 for Chemo. It lasts 2 months. I have been dreading it. It's a lot of heavy medications with lots of side-effects. However, we had a very long discussion with the attending physician today. Many of the drugs are the same or similar to what she has received in the past, so side-effects should be somewhat predictable. We will take a wait and see approach to the Methotrexate. So far, she is doing better on it. The break seems to have helped. She is completely wiped out right now, but we are getting used to that on heavy treatment days. She's getting much better at recognizing that chemo makes her sick and that she needs to just rest.

WILL; While Amanda was doing her chemo, Will had an ultrasound on his liver. The results showed a blood clot and calcification of the vein leading to his liver. Fortunately the doctor asked the technician to look more closely at which vein it was. They determined that it was the umbilical artery. It is supposed to close off after birth which means it should not pose a permanent problem for him. Actually, the doctor was very brief with us and showed no real concern for the condition. I'm not even sure if I completely understand the diagnosis. We will follow-up with his pediatrician tomorrow. She'll determine if it's an ongoing issue for him. It's a huge relief.

ERIN; I have to post a comment so that she doesn't resent me ten years from now for leaving her out. She goes to her allergist next month to hopefully give her the all clear from food allergies. She seems less lactose intolerant and has worked up to yogurt (with a lot of Lactaid). She's made a lot of progress with her fine motor skills. Most of our "home schooling" this past summer was devoted to her fine motor skills (thanks to those who had home schooling tips for us). She's still having a lot of behavior problems. But I don't blame her. It's been a rough year. Two steps forward, one step back has become the norm for our family. At least we are headed in the right direction.

Tuesday, September 1, 2009

Miracle




We have to thank the many friends and family that have wished us well, sent along gifts, and left encouraging comments. We cannot keep up with it all. But can say that our little boy is a miracle as a result of many prayers offered on his behalf. He keeps having problems that resolve before doctors can figure out what was causing the problem to begin with. The NICU stay was not pleasant, but easier compared to the many things we've gone through this year. Poor Will had his feet pricked every three hours for several days. His poor heals look like hamburger. And his veins were very poor for IV's, so he was constantly getting poked with needles. He's a very good baby to have tolerated what he did. He's much happier now.

Just a quick update, we are home, at least for two days. We had some questionable results on a liver ultrasound regarding a possible blood clot. Primary Children's wants to do their own ultra sound. McKay Dee Hospital was so good to us. The staff were so concerned about the health of both our children. They went out of their way to make sure that we can take Will down to Primary's during Amanda's Chemo. As a mom, I am frightened for both. They present many unknowns. But, so far I've seen time and time again that his health, her health, and my health have all seemed to coordinate in a way that has made things possible. Fortunately, I am feeling much better now that I am not pregnant. Which is good because the shock of coming home to three children was a bit overwhelming and I am going to need good health to keep up. Amanda was extremely excited to finally get to meet her baby brother. My prayers have been answered as she has had very good health during my absence and tolerated our week long separation well.




Monday, August 31, 2009

Homecoming

Things are looking much better. I won't go into all of the details but it looks like Mary Ann and Will can finally come home tomorrow. That means the girls finally get to meet their new baby brother after a week. Again, I won't go into the detail tonight, but we have an appointment at Primary's for Will and Amanda on Thursday. We are all very excited to get him home and I know many others are excited to finally see him as well. We will update more when we finally get him home.

Friday, August 28, 2009

Quick Update on Will


I have just a few minutes before having to get back up to the hospital with Mary Ann and check in on the girls at Grandma's. I thought I'd try a very quick update. Mary Ann was released yesterday but they were able to find an unused room in the hospital to let her stay in so she could stay close for feedings. The room is in an unused part of the hospital and very quiet so we decided to bring the girls over and let them spend some time with Mom which was nice. Will go moved yesterday, too. From NICU room 1 to NICU room 2. That's about 40 feet tops. But it is a small sign of improvement. He still hasn't been able to get his glucose levels under control on his own so they still have him on IV's and added a feeding tube. He also became jaundiced so he's under the fry warmer lamps. Poor guy. He had the shakes last night from messed up sugar levels and was just jittery. But on the other side of things it all looks good. Its just a matter of getting him the food and supplements he needs to get him bigger and stronger and then feeding on his own and things should work themselves out. Thank you to everyone who has prayed to get him here and continue to pray on his behalf.

Wednesday, August 26, 2009

Baby Brother



He made it. He truly is a miracle. I won't go into all of the details of why there were so many doubts about him getting here. I will just tell you that our family is blessed, excited, and grateful to have him here.

Weighing in at just 4 lbs 14 oz and 18 inches, Will is a tiny guy. At about 4:30 pm August 25th he was brought into this world whether he was ready or not. He looks very good until the blood result came back with a glucose level of 12. We didn't know what that meant either until they said they like to see that at least a 60. So he's in the NICU for a little while so they can stabilize him and watch him for a bit. His levels were stable late last night and seemed to be doing just fine.

He's much quieter than his sisters so far. Mom's doing fine. Things went 100 times better than the last delivery. The girls won't be able to see their brother for a couple of days until Will is out of the NICU since they won't let children in. Amanda is very excited for her baby brother, though. Erin, well we'll see if she truly gets what's going on.

Friday, August 21, 2009

MRI Results

Amanda handled her MRI really well. They bribed her with all kinds of toys and prizes. The anxiety leading up was far worse than the event itself and I think she's starting to getting more used to procedures now.
The radiologist read the scan very quickly and the doctor came to tell us the results before Amanda even woke up. As we have said before, we are very impressed with Primary's and their ability to be so organized. Amanda's scan showed "no toxicity to the brain" from the Methotrexate. Everything else in the scan looked good as well. It is a big relief. It is still obvious that she is not tolerating the drug well and we still have the issue of what to do with future doses. She is done with the heaviest dosing regiment, but will have another dose in her lumbar puncture in two weeks. The doctor felt this is long enough to give her body a break and we will have a "see as we go" approach to determine if another drug needs to be substituted. He was not terribly concerned about another "incident" as the drug has had time to decrease in her system. We'll never know for sure if it was a seizure, but we do know that the high level of Methotrexate caused it. We just need to exercise good judgement with her, trust the doctors, and take her back in if any problems continue. We are looking forward to a few days of rest and recovery from a very stressful week.

Thursday, August 20, 2009

MRI

Amanda had clinic today. Most of our time was spent talking with the doctor trying to figure out what happened this past week and what to do about it. We are left not knowing if it was a seizure or passing out. Aside from this the doctor was concerned about the extensive headaches she gets after treatment and how they are increasing in rhythm with the Methotrexate drug. "This treatment round is usually a break for people" was his comment. She had a good week around the beginning, but she is progressively struggling the more they increase the drug. So the solution to figure out how much the drug is affecting her is to do an MRI tomorrow. The nice thing about being an oncology patient is that you get in for special testing within hours when it takes others weeks. The MRI is needed because Methotrexate often shows changes on the brain when people become symptomatic like Amanda. If there are problems then her treatment will need to be regulated in the future because this drug is taken on a regular basis for the two year maintenance process. For today, he skipped the drug despite it needing to be the largest dose in the treatment regiment. Because she is in the best possible recovery tract, he felt we have some wiggle room. In my mind I was cheering while Amanda was hysterically crying about having to do another MRI. For me it means her being much stronger and healthy for when the baby is born. Unfortunate for her, MRI's are the most dreaded of all treatments because of the isolation and weird noises. But, this time she will be sedated. She's still pretty upset about it though.

Amid all this, the baby has miraculously stayed put. My doctor agreed to induce me next Tuesday instead of the following week. It seems a good compromise between Amanda's next treatment and the baby's healthy growing time. I'll be 38 weeks and have never made it to 39 anyway. I hope it will be what is best for both his health and Amanda's.

Wednesday, August 19, 2009

AMBULANCE

Our many neighbors and kind Ward members deserve an explanation for the commotion at our home yesterday.

Amanda has struggled with really bad headaches, mood swings, and hasn't been sleeping or eating as well since her last treatment. She seemed to turn around yesterday and we arranged a play date with her cousin. My sister had stuck around, fortunately, and after an hour or so of playtime we both found Amanda unconscious on the kitchen floor. From other experiences I can handle first aid for passing out (people usually come around pretty quickly), concussions (which Amanda's had a few), and seizures. The problem was that I couldn't figure out what was going on. Amanda would not wake up, we didn't hear her fall, we didn't know how long she was out, she didn't appear to have hit her head, and she's a medically fragile kid right now which created an entire list of fears in my head as a mother. Paramedics couldn't get her to wake up either. She could have been out for over 10 minutes. When she did come to, she was hysterical and incoherent until they loaded her up and we were on the road to Primary's. She just remembers riding her stick horse, feeling dizzy, a bad dream, and then being in the ambulance.

She is currently home and doing fine; just physically tired and emotionally tired from life not being fun anymore. A bunch of tests were run with no conclusive answers. I talked with the Oncology clinic today and we are of the opinion that it likely was a seizure. Severe headaches and seizures are a rare side-effect of one of the IV drugs she is currently on. So we plan to involve somebody from Neurology at our clinic visit tomorrow. We're not sure what the solution will be.

It was a very traumatizing experience. We are very tired. We keep praying that I don't go into labor in the middle of all of this. She needs to be more stable before the baby comes. We are trying to hang in there and just keep praying that it all works out. I've decided that's the best thing you can do when you have no control over your outcomes in life.

Friday, August 14, 2009

Routine


Amanda made counts for her treatment on Monday. It actually felt very routine. Check in, blood draw, wait for counts, talk with the medical staff, go to RTU, recovery room, finish off with chemo, get that pain medicine in her before we hit the road, and get the IV hydration pack whirling as quickly as possible. I think we have finally figured out a better routine as her recovery is proving to be more manageable. It still is taking her several days to bounce back, I've figured out she needs the hydration pack an extra day longer, and the pain/nausea meds are needed for a few days or her head is buried in the vomit bowel with a huge headache. It's not easy, but she still claims that getting her port accessed is the worst part to her because it involves a needle. We did have a huge melt-down this week about being lonely. And she's been a lot more lethargic than usual after this treatment. The tough parts are expected.

As for our baby, he is doing so well that the doctor wants him to cook two more weeks. That's a good thing because our next chemo date falls on what was supposed to be his birthday. I have no doubt he's just going to come on his own rather soon as all the impending labor signs are looming. Amanda is getting very excited, but clingy as I know she is anxious about this big change. Overall her health is strong enough for me to feel O.K. about leaving her care up to Dad and extended family for a while. My blogging may get more sparse, but I plan to update about any changes.

I'm overdue for promised pictures. The top picture is Amanda playing with her cousin. Sienneh was a good sport about wearing the mask while Amanda's ANC was really low. They are both so much happier when they get to spend time together!

The hydration pack is quite heavy. I still have a knot in my back from mine. Amanda came up with the solution to use a wagon. Here's Erin chasing behind as Amanda maneuvers through the house. Wish I had thought of using one.












Keeping Amanda and Erin busy has proven to be a challenge for me in my diminished energy state. The solution; put Erin's in charge of all housework :)

Much to my surprise, Amanda's hair is growing back in and she has no mouth sores as anticipated. Even though she has been completely worn out all week and has side effects I didn't expect, I left clinic feeling fortunate that she is not as sick as some of the other kids we see there. I'm very fortunate to have these two little girls!!! They have both proven to be very challenging, but these smiles remind me why it's worth it.

Wednesday, August 5, 2009

Quick Update

I am so happy to say that Amanda is doing GREAT! Her hair is even growing in, much to my surprise. The medication side-effects seems to be calming down a bit right now. The social isolation still gets to her and we invited her cousin over to play today out of desperation - with the mask being a requirement. Amanda and I agreed that she should not have to wear a mask in her own home, so it is the responsibility of our healthy guests when counts are dangerously low. Fortunately my niece will do things for me that she won't for her mother (sorry Jenny, but it's true). It's amazing the difference play time with a friend makes.

We are down to the last 15 days of the pregnancy. With each pregnancy I get excited when the expiration date on the milk exceeds my due date. My frantic nesting has been replaced with a lot of fatigue, discomfort, and fluid retention. But I will gladly take it over the hyperemesis, which fortunately continues to improve. I've adjusted to drinking without my PICC. I've had several questions why it was removed. I'm certain I have a clot, or clots, in my arm. So, I'm on an aspirin regiment (again). Oh the joys of pregnancy! I look forward to just focusing on my kids again and not so much my own health.

I promise more pictures soon. Our memory card ran out and we just got the new one. I know words are more boring than pictures, so I appreciate those of you that take the time to actually read how we are all doing.

Saturday, August 1, 2009

The Difference a Good Doctor Makes

Amanda surprisingly made counts for her treatment Thursday (barely). I was very nervous about it and spoke up to the physician assistant about the problems with the last treatment round. The response was to just give her the nausea medication, which we did last time, and then he ordered a different nausea med that doesn't typically work as well. You should order what works best for the patient, not what med is your favorite (my medical Arch Nemesis list begins). Fortunately, the doctor has the final say so and I am very happy with Amanda's physician, Dr. Bruggers, who changed the order when I made the request. If I were to choose a doctor based on clinic visits, she wouldn't be my choice. She's a bit quick and sometimes prickly. But having worked with her closely during out diagnosis phase she proved to be one of the most competent doctors I've ever met. She is so confident of Amanda's recovery that I often replay in my mind her optimism in telling us what the outcome is expected to be. The best part about her is that she does not tolerate patient discomfort. She goes out of her way to find a solution. Even when Amanda was hospitalized, she chewed out a nurse when she saw how black and blue Amanda's arms were from endless blood draws. She knew there was a more comfortable way to get what was needed and she made sure it happened. So for clinic, Amanda was given a higher dose of the better nausea medication, a strict medication regiment to keep up on the nausea/pain, and home IV fluids for a few days. Whatever Dr. Bruggers did different worked and I hope it will continue the next few rounds. Amanda of course came home feeling ill, but she was able to tolerate the pain medication before the headache and body aches exploded. We avoided the extreme pain/nausea cycle. Amanda was even riding her scooter the next day, much to my surprise. I'm much more optimistic that she can handle the next two treatment rounds. I continue to pray that she won't be miserable while I'm away from her.

She's still struggling with bouts of nausea and is hooked up on IV fluids as we speak. Last night we were both up at 4:30 am with nausea. We both enjoyed our Zofran medication (God's gift to the nauseated), a bowl of cereal (the must have diet for the nauseated), and talked about ports and PICC lines. Not your typical mother-daughter bonding activity. But it makes me chuckle that this feels like a normal thing to do now.

Tuesday, July 28, 2009

Making Counts

We're continuing to learn all kinds of slang medical lingo. Making counts means that Amanda's blood counts (WBC, ANC, HCT, Platlets - more lingo) have to be at a certain number to move forward with more chemo. Her ANC, immune system, was too low yesterday and she didn't make counts. In fact, it is 0.3, the lowest she's ever been. She has virtually no immune system right now which makes me quite nervous. We go back to clinic Thursday. If her counts don't go high enough she will only have the Vincristine medication and the dosing on the other med gets all shifted around. It is all so complex. I continue to be so amazed by the smallest details of cancer management that somebody has learned through trial and error. The unfortunate thing is that this completely throws off our schedule for when the baby will be induced. I asked the nurse if we can count on any schedule for next month. She laughed and said that we chose the worst possible phase of treatment to have any predictability. This doesn't describe chemo treatment as much as my life right now!

The great thing about additional time between treatment means that Amanda feels better, gets stronger, eats more, runs around more, and is building up her strength. It also means less stress for her. I've noticed a real change in her maturity level over the past few weeks. I think she has largely accepted what she must deal with and is coping with it as best she can. She's not as sad about what she cannot do and is trying to find more creative ways to be happy and entertain herself. We are now three months into this. We are never fully prepared for the hard days and they are always a big setback. But overall, I think we are all adjusting and finding ways to make our lives meaningful right now.

Friday, July 24, 2009

Baby

Amanda is stable right now. She's pale, weak, and looks like a cancer patient should. She spends most her time doing sedentary activities. There are still many highs and lows all throughout the day, both emotionally and physically. I have found that talking about the baby keeps us both focused and upbeat. She is very excited about him coming and I know she wants people to be excited about him too. For those interested, here's an update.

Two months ago a funeral looked more probable than a homecoming. I think many prayers have benefited him, but I am still cautiously optimistic about every baby item I organize and acquire. With each one of my specialist appointments I am reminded that his progress has not been normal nor expected. We don't have a clean bill of health yet. He's still a month behind on his growth, but is growing at his own steady pace. His heart is still slightly enlarged, but his cardiologist thinks it is not a problem. It is just "working harder than normal" for some unknown reason. She thinks it's pregnancy related and will get better when he's born. He is missing one artery in his umbilical cord, which may or may not be contributing to the heart condition. We may never know what caused all his problems, or what has caused them to resolve. It's still a high risk pregnancy which means a lot of non-stress tests, doctor's appointments, and many ultra-sounds (nestled between chemo treatments, home health - welcome to our crazy medical lifestyle!!). He needs to come out as soon as he's full term. We have Aug 20th scheduled as the day to come, but will adjust it around Amanda's chemo treatments. My doctor's have been so supportive of her and our situation. This is the plan unless her treatment schedule changes, he goes into distress, or his growth slows down. I think we can make it - just one day at a time right now! We are entering a lot of scary unknowns, but I have known two things for a while.

1. He will come when Amanda is well enough for me to be away from her.
2. One of the reason's he's coming is to help Amanda.

Tuesday, July 21, 2009

Bouncing Back


Two things are notable about this picture. First, after four days of being quite ill, Amanda finally felt well enough to leave the house. I don't anticipate her getting out as much in the next two months due to the medication side effects, so seeing her go for a short walk is uplifting. I hate starting new treatment rounds because it seems like quite a random process of waiting and seeing which unpleasantness you will get struck with. When they give you the cancer treatment handout it lists all the medications and all the potential side-effects. Various medications range from just a few side effects to upwards of 20. I don't' understand why she has hardly any side-effects to Vincristine, but seems to be racking up some bad ones for Methotrexate. So it goes. Fortunately, the intense nausea/vomiting, and pain has subsided. It lasted a solid 48 hours. Right now she has no appetite, excessive thirst, her eyes are starting to swell up and water, and she doesn't have a lot of energy. These are manageable. Unfortunately she is the princess and the pea kind of kid and makes mountains out of molehills when it comes to anything out of the ordinary with her body. She still puts a band aid on everything that's uncomfortable. This personality trait doesn't help much. But it is a relief to see that the intense side effects have the potential to slow down and give her somewhat of a break between treatments. It gives me a chance to catch up on my sanity.

The second thing that is unusual about this picture is that Erin and Amanda are calmly sitting this close together. We even caught them resting their heads on each other. Erin has had so many behavior and sleep problems, from food allergies and what's thought to be a neuro-processing disorder, that it has been difficult for Amanda to tolerate her. As her early intervention team put it, "Erin's too smart and wants to take over the world." Combine that with another head strong child and you are in for some problems. Over the past few weeks they have accepted the loss of interacting with others and are getting along better than ever. I know it's just by default, but it's been good for them to learn to like each other again. There are still hard moments between the two of them, but overall they seem happy to have each other.

Saturday, July 18, 2009

Breaking Down

I think it's getting harder to keep my sanity through all this. The irony is that Amanda had her best week yet. That's what makes it so hard. I get a taste of normalcy, which I long for, only to be thrown back into watching my kid suffer. It seems almost cruel. Yesterday's chemo proved to be brutal on her. She came home so sick and miserable. She had severe pain in her hips and legs all day and night long. It's the type of pain that nothing but heavy, addictive pain drugs control. I suspect it's bone marrow depletion, but I'll have to ask the doctor because it's not a typical side-effect that I expected. We struggled for hours to get on top of the pain because the only pain medication she can take causes nausea/vomiting. This is also the side effect of the current chemo she is on. The anti-nausea medication doesn't seem to stand much of a chance with both of these drugs. After hours of whimpering in pain, she finally threw up. I physically held her up in the hallway while she was vomiting, only to abandon her myself to gag over the same bowl. I felt awful as a mother. I'm getting very tired of cancer and hyperemesis gravadium. I unfortunately had my PICC line pulled this week due to complications from it. I'm struggling with fluid intake, which makes me more nauseated. Yesterday was unfortunately a bad nausea day for both of us. Some days being sick together comforts her. But most of them are overwhelming for me. Earlier this week I told Amanda that I was getting my PICC line out, she sobbed and said that now she's the only one that is different. It was so sad to see her reaction. She also asked me how long she will have treatments. I have been dreading this question. I was honest and said that it would be the end of 2011. She sobbed again. Despite these setbacks, she is learning to be more resilient. I think she's doing better with resiliency than I am. As of right now she's feeling better and happily acting more like herself. She doesn't complain about yesterday and seems determined to enjoy the day despite whatever setbacks she had this week. Fortunately, this is what keeps me going. Every day is new. I have to remind myself to not let yesterday's despair dictate new days that have the potential to improve my hope. The only exception to this is that we are planning to buy a minivan this week. No amount of encouragement or counseling is going to make the dreaded minivan a welcome part of my existence :)

Tuesday, July 14, 2009

Standard Interim Maintenance

My pregnancy has taken my attention away from blogging recently. I will be induced in about 4-5 weeks which has triggered frantic nesting, contracting, and not feeling the best from running on empty. Fortunately Amanda is doing well enough that I have the chance to focus on other things. She started standard interim maintenance therapy without any problems. So far she is having fewer than normal side effects, but this will change as the month goes on. Her bowel and eating habits are changing. She told me the other day that she "HATES pickles." It made me laugh compared to our earlier drama about not having enough pickles. Now it's cereal and chicken legs. At least she can eat. The objective of this round of treatment is to get her blood counts as low as possible, but to keep her healthy. This ensures that the leukemia cells are destroyed. So far this round of treatment feels like a bit of a break compared to the others. I really think she's doing better because of fewer lumbar punctures. Physically she is making a lot of progress. She's participating in more activities rather than just vegging on the couch. And she's returning back to her normal chatter box self, asking all kinds of inquisitive questions. She is still struggling emotionally coping with all of this. The tantrums and mood swings were getting more and more frequent, and we can't blame it on steroids this time. Scott and I decided it was time to take the risk and let her play with somebody again. Her doctor has made it clear that she needs to just be a kid to get through this. She played with two cousins this past week. Watching her play and laugh was so encouraging. As you can see below, this smile was not faked. We took the picture after I told her when she'd see her cousins again.



Amanda is also smiling out of excitement for the new hat. We have to send a thank you to Kristen for it. Amanda has enjoyed putting various flowers on it. Kristen has gone through cancer three times. You have to check out her blog and some of the links they have to other people going through tremendous things. http://sheisourangel.blogspot.com When I think of somebody going through leukemia three times it makes it easier to think that we can handle once!

Tuesday, July 7, 2009

TIS A GIFT

"Tis a gift to be simple, Tis a gift to be free....."

Amanda celebrated a week free from viral infections - what a gift! As for simplicity, she is making progress towards accepting the changes in her life. She told me that she didn't think we'd go to the parade on the fourth of July because of the crowds. She understood and was not disappointed. There is room for a lot more adjusting, but I'll take one small gift at a time. We did find a remote place to watch fireworks and managed to go "swimming" in grandma's hot tub (I'll spare Scott some dignity and not post pictures of him in a bathing suit, even though I think he looks just fine). No big parties, parades, or social gatherings. But, we are finding many ways to simplify our life and find moments of happiness. It is what is getting us through this.

Amanda is doing so much better physically and mentally. She has been feeling well enough to start up on some home schooling work, she's been going for walks around the block, and she's even tolerating Erin better. We still have rough moments every day. She has regressed a lot emotionally, and her anxiety level is still extremely high about, well, everything. But she seems happier, and that really is what matters most.

Tomorrow starts round three of five of her chemotherapy treatment. She will be off oral chemo drugs for about six weeks. This will be replaced by IV chemotherapy every ten days at clinic. One of the drugs she has had several times already, and she tolerates it well. The other drug has been used during her lumbar punctures, but typically causes mouth sores when done through the IV. We'll just have to wait and see how she does. And whatever hair she has left should be wiped out by the end of the month. Fortunately, she has only mentioned missing her hair once. Her immune system is very low right now, so we have to continue to cautiously go about our newly simplified life.

Wednesday, July 1, 2009

It's all fun and games until.....


Yesterday was Scott's birthday. I talked it up with the girls like it was a trip to Disneyland. They were so excited and spent most the day decorating, making the cake, and designing gifts and cards, etc. One of the nice things about keeping the girls in a bubble is that everything has become a lot more simple in our house. They get excited over small things now. It was so nice to see Amanda laughing, playing, and getting excited. She seems to be over her viral bug. It fortunately was a short one and she is getting back to herself again. She also had her port de-accessed by her "favorite" nurse before the party. She gets so nervous to have it done even though it's becoming quite routine. But with total irony, it was all fun and games until she fell off the kitchen bench and banged up her knee pretty badly as soon as Scott came home. She couldn't walk for a while and was limping most the night. Poor thing, it's two steps forward, one step back with everything she does right now. But, most the day was very happy and fun for her. It hasn't been that way for a long time. It must have been some party because she's been asleep for 13 hours now. Who would have thought that eating cake and opening presents was so much work?

Here are some pictures of Amanda starting to feel better.

1. Girls making Dad's birthday cake. Wow, they are actually cooperating.
2. Getting some fresh air on the backyard swing in her new favorite hat.
3. The Nef version of camping - cooking smores on your backyard BBQ
and sleeping in your own bed that night!










Monday, June 29, 2009

Cross your fingers

Ok, I'm going to try this again and announce that things are improving. I don't care if I'm setting myself up for how everything bad happens in rounds of three. Trying to stay optomistic is what keeps us going. Besides, bad things happening in three's happened a long time ago for us. I think we're three to the power of ten by now!

Amanda's fever broke today. It has gradually declined from Saturday night. She has slept excessively, her headaches have declined, and for the first time in weeks she is acting more like her normal bubbly self. She must be getting more tolerant of not feeling well because she didn't seem very phased by a 101 tempature most of the weekend. Aside from the emergency run to Primary's, whatever she is fighting off has been managable for her - nothing compared to last weekend. Keep your fingers crossed!

Sunday, June 28, 2009

2 for 2

My enthusiasm to be optimistic is quickly dwindling away. I cannot post anything positive now without a huge setback. I'm 2 for 2 now in saying that she's doing so well right before an emergency trip to the hospital.

Amanda started running fevers off and on again Friday. Once again, the lumbar puncture became my suspicion. She was having lots of headaches, was very ornery, and sleeping more than usual. Her fever started spiking last night - 10:00 on a Saturday night of course. This meant a trip down to the emergency room. Talk about the belly of the beast for a cancer kid! It's was nearly enough to induce a parental panic attack given the amount of germs surrounding her. I'm so grateful for Clorox Wipes!!! Keeping things sanitary and her sane was a two man job for Scott and myself. Overall, she did pretty well given the late hour. She was not miserable like last week. But, her fever spiked pretty high once we got there. She got her preventive round of antibiotics and we waited for labs. She was actually relieved that she doesn't need to have her port accessed on Scott's birthday this next week. It's interesting what stresses her out. Anyway, her labs looked good enough to not require a hospital stay, and she has no other noticeable symptoms. We made it home before 3am, and her fever was already starting to go down by then. We'll watch her closely. Again, she'll be hospitalized if her condition worsens. Hopefully she'll sleep most the day and continue to get better.

It is likely not the flu, as she was on Tamiflu throughout the week. But the doctors think it is some kind of viral bug again. I'm about to pull my hair out. We have been soooo careful with her and ourselves. Nobody in the house is noticeably sick, and she doesn't go anywhere anymore. In fact, I've had several meltdowns from her this week complaining about how isolated her life is. She hasn't played with a friend in over three months. We're trying so hard to protect her. I don't know what we are doing wrong.

Thursday, June 25, 2009

Back to life

I am so happy to say that Amanda has recovered from the stomach flu and is back to herself. Well, her "new life," as she puts it. She woke up today with more energy and coloring to her face than I've seen in several weeks. Her stomach calmed down a few days ago and yesterday was the first headache free day, which was just in time for her weekly clinic trip. I have not been convinced that the intense headaches were just from the virus and her team of medical staff agreed. We are still suspicious of her lumbar punctures causing problems. The doctor didn't think her brain cyst was an issue (no CT scan, yeah!) and instead we came up with some other ideas of how to try and improve the procedure for her (IV fluids during sedation, more bed rest on her back, drinking coca-cola (seriously) the type of needle used, and being exactly precise as to the amount of spinal fluid coming out as chemo therapy going in). I think what we tried is helping based on how much better she's doing today. And her LP's will go from weekly to about every six weeks, so this will probably help as well. She also doesn't have to go in for clinic until July 8th. We'll start treatment phase 3 of 5 at that time, if her blood counts are high enough. Her immune system took a pretty good hit from this virus. But, her red blood cell count is up, which means more energy and feeling better. The next two weeks should give her time to rebound even more. She will just have a daily oral chemo drug and some home health blood draws. The medication has not been as bad as I feared. The side effects are minimal. I'm officially leary to post any hint of optimism, but it does look like things can calm down for a few days for her.

I had to throw this picture in here, even though neither one of us is looking very spectacular. But who really looks great when they are sick? It's not that often that mom and daughter get to sport matching IV pumps. I'm hoping this is the only time!

Monday, June 22, 2009

A "Happy" Father's Day

At 11:00 last night Amanda started talking and acting more like herself. Scott was able to finally get the Father's Day gift he was hoping for. Not what we'd consider a "happy" Father's Day, but it ended much better than it started.

Amanda is in no way completely better. But her headaches are more manageable, she broke the low grade fever, and she is slowly eating more. No more screaming or having to drug her just so she's comfortable. We'll keep her on the hydration pack for another day and they will re-evaluate her condition at clinic on Wednesday. It is such a relief to see her getting better, even if better means a weak cancer patient. It will still take her several days to bounce back to that. But we did it without a hospital stay. Yeah!

The results of her flu test are negative. It's just been a nasty stomach bug. Seeing how hard it hit her, and how mild it was for the rest of us, makes me absolutely paranoid of her catching anything else. We are going to have to be so careful, especially considering that swine flu is so prevalent. I can't even imagine how bad that would be for her right now after watching her go through this. We'll just do the best we can, hope that she continues to improve, and be as careful as possible to keep her virus free.

Sunday, June 21, 2009

So Sick

When I was told that Amanda had Leukemia, the first words out of my mouth were, "How sick will she get?" What we've witnessed the last 48 hours are exactly what I feared most. She has been so sick that the words miserable don't seem to touch it. As a parent it has been almost unbearable to watch what she has to go through. Her head is "exploding with pain" as she puts it. She just screams. The pain medicine makes her throw up and she didn't keep much of anything down all day yesterday. I finally asked Scott to give her a priesthood blessing before I had my own mental breakdown in front of her. I knew it wouldn't magically heal her, but I know that my clarity of thought has improved since and I've had much better ideas come to my mind of how to provide more comfort to her. I called the on-call doctor to figure out a better medication regiment. I was given the weekend on call delema of getting anything done, and that she'd just call in some different oral nausea meds. I knew Amanda wouldn't be able to keep it down and I argued that we'd be up all night with her screaming in pain. The doctor was reluctant to prescribe anything but oral medication and noted that cancer kids just have more intense symptoms, that's the way it is. This was not the right answer to tell me. I demanded her prescription be IV push meds and told her that I've maintained my own PICC line for 5 months and don't need Amanda hospitalized in order to get it. The doctor finally agreed to home care, but said they'd hospitalize if her condition doesn't improve by Monday. Home health was very fast, unlike her prediction, and the pharmacist spent an extensive amount of time with me discussing everything I needed to do. FYI -I'll take an on-call pharmacist any day over an on-call nurse practitioner. They always seem to be so helpful and patient at odd hours.

As I thought, the IV meds are helping. She still is in a lot of pain before the next dose is due, she's still nauseated, and a fever comes and goes. But, she is far more comfortable now. I've also figured out better ways to get her to calm down. Much of her pain is intensified by her crying. I've mostly made up silly stories about going to the beach with the people she is very attached to. We are going to owe her one giant vacation there when this is all over with!

It's ironic how some of the hard trials in our life prepare us for something else. I never expected that learning how to manage my own home hospital care would help prevent Amanda from the trauma of being hospitalized. That, and I'm fortunate to have a sister-in-law that is an excellent pediatric nurse whose son had a bone marrow transplant. So, her trials have provided me with hands on experience and advice that I don't get from clinic doctors. She also knows exactly what we can manage at home as well.

As of this morning, I can say Amanda's condition is improving slightly. Hopefully I haven't spoken too soon. Doing better means she actually left her room and kept down some waffles. She is also sleeping a lot, which gives me a break. She's very moody and emotional, which is proving to be exhausting for all of us here. She's such an emotionally sensitive kid. But she'll get through this. I know she will get better. She's too strong willed.