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!

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.

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!

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.

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.

Spoke too soon!

I am now very leery about announcing good news. Amanda was doing so much better until I posted something about it. She came down with a fever early yesterday morning. We followed the clinic's protocol and called it in. We were told to go down. I frantically packed the bags while listening to her cry hysterically. I was convinced she would be hospitalized. Fortunately, she is home because her counts are so high (her ANC - immune system - doubled again!). It is definitely a blessing for her. But, unfortunately, she is not doing so well. She has picked up a viral bug of some kind. The clinic is treating everybody like it's the flu. They said the hospital is full to capacity with flu, and several cancer patients are contracting it. We should have the test results on Monday. I think it's a stomach bug that Scott and I had last week. Unfortunately, he just thought it was something he ate and I have hyperemsis; I'm always nauseated. We've learned our lesson to always wear a mask, even if it's indigestion. It's so frustrating. We've been so cautious with her. The fever didn't last long, but she's thrown up and has been very nauseated to the point of not getting much down her. The worst part is a very severe headache. She is in a lot of pain. The more pain she's in, the more nauseated she is, and the less medicine we can get down her to help. It's a bad cycle. And the fact that she just had a lumbar puncture doesn't help. If she doesn't drink enough after the procedure, it triggers terrible headaches that are hard to get control of. I'm currently waiting for home health to show up to access her port so I can start her on IV hydration. I called the on-call doctor and said I already have all the hydration supplies and plan to use them on her unless they told me no. The doctor was a bit surprised, but didn't argue with me. I'm hoping it will help. If not, it's back to the clinic and a potential CAT scan. I think she's back to square one with fear and anxiety, so pray she can pull through this without needing a hospital stay and a good psychologist.

REALLY???

I about fell off my chair at yesterday's clinic. There was nothing out of the normal routine - Amanda lamenting about being hungry, scared when they have to access her port, eager to get home, etc. But, her blood counts were totally unexpected. Her immune system (ANC count) tripled and her platelets doubled in one week. But at the same time, her red blood count went down, as I had suspected, but not quite low enough for a transfusion yet. I just don't understand how that is possible. I had to reread it several times. To have her counts go that high so quickly, but selectively choose to have some drop. How does her body do that?

At least for this week a paperclip won't cause her to bleed out and her immune system is temporarily within a normal range. Perhaps we can enjoy an outing for Dad's birthday and the 4th of July without our Lysol bubble force field at full force. I still plan to clorox down anything and everything until 2012. It's too much of a habit now. And the anemia really does slow her down and make her not feel well. But if I could choose which count to have problems with, I'd choose the red blood cells. For an active social kid, it's the least life threatening of the three.

GOOD DAYS AND NOT SO MUCH

I won't sugar coat it. Amanda is just having moments where I know she is downright depressed. I don't know if it's the new medication, trying too hard to do too much, adjusting to all the changes and stress....or likely all of the above. She is so smart and understands so much, but I think she can't cope with it all emotionally. Yesterday, she wasn't herself and noticed all the hard changes in her life. I couldn't argue with her and it's hard as a mom to support her when I'm having all the same feelings. Fortunately, they seem to be passing moments for her. I guess I would be worried if she didn't have them. None of this is normal for us, but we're slowly adjusting.

She is on her new medication. Overall, she is acting more like herself and has regained a lot of strength. I can tell by how much she runs around the house teasing her sister. (I had to actually discipline her because she tried to turn Erin into an art easel). But last night the nausea spells started. I think her counts are dropping too because she's pale enough to be mistaken as an albino. We'll ask for some anti-nausea medication at clinic tomorrow and hopefully a blood transfusion will be in her near future. None of it is pleasant, but manageable.

I have finally figured out that all of her really good days and moments involve having Dad around. She has become so attached to him. He offers her something I can't and I love him for it. Here she is, thrilled to get out of the house and spend time together as a family on a picnic.


But, in our attempt to have our primary lesson outside, we were sent rain. God didn't seem to approve of the venue.
The headbands from aunt Leisha are a big hit! The girls are really getting into the head coverings.

What a Sweet Sister

Amanda's cancer has brought out the two year old in her, and the twenty year old in her. I've had several medical appointments lately and she's been more keenly aware that our unborn baby is having some struggles. Today she said that she wants me to tell everybody about him on her blog. She wants me to ask people to say a prayer for him since that will help him get healthy and strong. She is capable of being so sweet and wise beyond her years sometimes!

Although this blog is for her, we know many people are concerned about our family as a whole. So, per her request I will let you know that our little guy is proving to be pretty tough. We were advised (the day after Amanda was diagnosed) to terminate our pregnancy because it was less than 25% birth survival, and a pretty grim outlook beyond that. He had virtually no amniotic fluid and a very enlarged heart, plus a few other technical health problems that I don't think I can even spell. Long story short, he has made an amazing comeback that our doctors have no explanation for. The doctor just tells us that he is glad to be wrong and that this is not the norm. The major health conditions that were present have almost completely resolved with the exception of him being very small. We are being told to plan on a 4 pounder at most, but that he can very likely make it to 37 weeks (in August). We have no explanation as to what has caused the problems. It really doesn't matter anyway. It has always been up to God what happens. But I do not believe it coincidence that his health begin to improve when we started asking people to help pray for him instead of keeping it quiet. So, I think Amanda is very wise for her young age and I appreciate her ability to have faith in something she doesn't understand.

SHEARED

As you can see, Amanda is wearing a lot less hair. She does not like the word "bald" and was reluctant to let me cut it. But the misplaced mullet, comb-over, thinned out look was just not becoming to her pretty face. So we discussed all the various animals that shed, molt, etc....and eventually grow it all back. She decided that she liked the idea of a lamb being sheared and she even baaaaed as I was cutting her hair. So, she is NOT bald, she is SHEARED and relates herself to a little lamb right now. She didn't even bother to look in the mirror when I was done. It's usually just the anticipated change that bothers her most. She seems very content with her new look.

Today started round 2 of 5 out of our treatment phases. This one will last a month. She had a very good clinic day. I love that the staff listen so intently to how she is doing. I don't always know what to expect from her treatment or know what to bring to the doctors attention. I started complaining that I dread lumbar puncture days because she does so poorly afterwards with headaches, fatigue, and mood changes for a few days. I also told them she has a small brain cyst; I think that took the guess work out of trying something more cautious. I thought they already knew about it - oops. They recommended we use a different needle and be highly cautious of the ratio of fluid taken out and medicine put in. The new needle was used today and made a HUGE difference. She came home and played the WII. She usually curls up in a ball on the ride home and needs a few doses of pain medicine. I'm sooooo glad I mentioned it.

This month starts a daily dose of oral chemo which we'll start tonight and cross our fingers she does well. She has really started to bounce back lately. She's laughing more, acting more like herself, and even tolerating Erin to the point of teasing. She's also much stronger. Her butt muscle exercises are doing the trick.

Our only setback is that her hip x-ray showed some density depletion and spots where her bone marrow has stopped working. This is due to the steroids. We anticipate that they will go away now that she is off the heavy steroids. But, if it doesn't, we'll have to look at altering her treatment plan as these are not good permanent side effects.

Many Thank You's

We are very behind on the many thank you's we need to offer to people. We cannot possibly thank everybody in person; there are too many. From gifts, to kind words, to donations, to prayers, it has been very uplifting for us to know how many people are in support of our family. It is a very tough time in our lives right now. I am still on IV's and find some days very difficult to care for myself, let alone my children and their individual health problems. We are in the midst of a very high risk pregnancy with a severely growth restricted baby. We will likely be facing an extensive NICU stay sometime this summer and are praying that our baby comes when both he and Amanda are strong. Erin is, well, Erin. As my brother-in-law says, "everything about that kid is special." Her unique allergies and behavior oddities live up to that statement. And, then there is Amanda and cancer. We often hear comments that it is like Job at our house. I do not agree because we are surrounded by friends, family, and total strangers that are supporting us in amazing ways. I think to not have that would be far harder than what we are facing. The only way I can think of thanking everyone is to post more pictures so you can see for yourself how we are doing. It seems to be about all that we can offer during our period of isolation. And it gives us a way to show that despite hard times, we really are hanging in there.


Here's a get well surprise left by Amanda's SEM class. It made her smile after a tough treatment day. Her regular class made her a wonderful card that rolls out the length of the driveway!



Here is Amanda sporting her new haircut and new steroid cheeks.


We can count on one finger the number of family outings that we've gone on in the last six months. Amanda was finally strong enough to get out of the house and walk on her own (for the most part), so we found a secluded place to watch the air show this weekend. Both girls lasted much longer than expected. Having the ice shack behind us and a Dad eager to splurge on his girls helped. I was the one that pooped out before they did.

We are finding new family past times. Scott now spends every Sunday morning teaching Amanda how to make french toast. She is getting pretty good at cracking the eggs. The girls eagerly put on their aprons before Scott's even up. The only problem is that Amanda really needs a hair net. Her hair is falling out everywhere!!! She's a walking comb over right now. Fortunately, she doesn't seem to care much, but is still reluctant to go completely bald by choice. Before my new vacuum explodes from all of the hair "gerbils" around the house, I'll hopefully be able to convince her to cut it all off soon. Fortunately, no hair was found in today's breakfast!

Next phase of Chemo

Not all of today's treatment went according to plan.

First, we found out all the testing results to determine which treatment round she goes on. Once again, we are very fortunate. She is doing very well and gets the lowest risk route. This means the fewest medications and the most optimal recovery outcome - YEAH! We were anticipating this route, but it is a relief to have it confirmed. We also opted for the non-clinical route. Because her prognosis is so good, and for several other reasons, we did not feel it necessarily beneficial or necessary for her to be part of a research study at this time. This also means fewer medications.

The change of plans was that she was not able to begin her new treatment regiment today as planned, so she didn't get any chemo. Her red blood counts were too low. She's very anemic right now, but they chose not to do a blood transfusion. Instead, they are going to give her body another break for a week and see if she can produce more red blood cells on her own. It prolongs her treatment a week. But the stronger she can be going into the next round, the better.

It also did not go according to plan as the doctor was concerned about her regular physical work-up. She's really struggling to walk. It is a side-effect of the intense steroids. But, she fell on her hip several days ago and has maimed that hip ever since. The doctor was concerned and had us work with a physical therapist today. She isolated muscle weakness in her right hip, or "weak butt muscles" as she put it. With all the sitting Amanda's been doing I would think her butt would be nice and strong! We have been assigned some exercises to have Amanda work on. We also did an x-ray on her hip to rule out an injury.

And I must point out that I don't think I heard all but a few complaints today. Compared to last weeks screaming fest, it was a nice change. I can thank the lack of steroids for that, and having Dad attend. I keep asking her why she's so ornery for me and not him. Suppose it's just a mom thing. (all you mom's should shake your head in agreement!) Despite having dad there to entertain her, she is doing much better with her mood. She is acting more herself. So we will enjoy another week of resting and building her back up physical and emotionally.