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.

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.

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.

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.

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.