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Thursday, December 29, 2011

Frequent Shopper Points?

Primary's aught to have some sort of frequent shopper discount. Seriously.

Once again, the home health nurse came just minutes after my last blog entry. It was a stressful visit, but in the end, she did manage to get the chemo administered.

At first, she tried to flush the Port, but the needle was bent again. So she de-accessed it, but she didn't know exactly how, and I'm not sure she did it the way she was supposed to. But what mattered was that the bent needle was removed. After that, it wept a sort of clear fluid that was tinged with blood for quite some time. Over time, it turned thicker, until it was just blood. She tried to access the Port at that point, but missed it by a hair. Matthew was absolutely flipping out at this point, but we had to try again. She tried one more time, and we all breathed a huge sigh of relief when she tested it and we saw his blood draw back into the syringe. I think all four of us (Matthew, the nurse, Justin and me) were totally exhausted by this time.

After she got it all taped down, she administered the chemo and a few other things (anti-nausea, Port cleaning agents, and such) and by the time she was done, Matthew's pre-school volunteer teacher (Miss Caroline, who we LOVE!) showed up. She recognized instantly that he needed to play tonight, rather than serious learning. She played with him for half an hour, and he was totally cheered up. Hooray for Miss Caroline!!!

By this time, it was roughly 7:00 at night. We ate pizza, rested, and watched some TV. By 8:20, Mikey was ready to go to bed. I think the rough Home Health visit probably wore him out too - and the girls. Anyway, I told him Matthew would join him in a few minutes. Within 10 minutes, I realized Matthew had a fever.

He had been hovering at about 99.5 or so all day, which happens often. The doctors don't consider it a problem unless it's above 100 for more than an hour, or if it goes over 101 at all. His temp was 100.6 at about 8:20. I knew that we wouldn't have to go in if it was 100.6, unless it stayed that way for an hour. So I waited. That's hard to do though, and I checked it about 20 minutes later, and it read 101.9! I checked in the other ear, and it read 101.6. I decided to give it 10 more minutes to see what happened, and it read 101.3. Either way, 101 is when they tell you to go to the ER, so I called the on call oncologist. She asked about symptoms, which he had none of, and she asked what his treatment situation is right now. I explained about our home health visit, which had been just a couple of hours before, and that he had gotten a new Port needle. She said we needed to go straight to the ER.

So, we packed up a quick overnight bag (in case of being admitted) and headed up to Primary's. When we got there, his temp was 101.8, so I knew I did the right thing. They took blood samples, hooked him up to IV fluids and antibiotics, and we settled in. They told us that if he was neutropenic with a fever, they were going to admit him, but if his ANC was above 500, they'd do the antibiotics and send him home. His ANC was 900, which was a pleasant surprise, since it had been cut in half pretty much every day this week. (3600 Friday, 1800 Monday, and 800 Tuesday)

So, they sent us home at about 2 am, with strict instructions to call the clinic today. If Matthew's fever comes back, I can give Tylenol until 24 hours after the antibiotics. After that, it's back up to the ER. So far, so good. No fever this morning. I hope the meds they gave him last night zapped whatever caused the fever. I called the clinic, and they'll have a nurse call me back sometime today.

Last night marked our fifth trip up to Primary's in 9 days. So, you see, we should get some sort of frequent shopper points.

Wednesday, December 28, 2011

Next Time, I'll Knock on Wood

Just minutes after my last blog entry, Home Health came to the house to do Matthew's Chemo, and they couldn't move any fluids through his Port. They tried, and he screamed that it was hurting him, for half an hour, and finally they suggested we go back up to Primary's. So, I called the clinic, and they told me that I would have to bring the chemo from home, and they can't administer chemo if it's brought from outside, so I would have to do it.

Deep Breath.

So, we went up to Primary's, and they checked out his Port. At a good look, you could see while it was still accessed that the needle was bent. Severely. The nurse at Primary's said it was not a great Port needle in the first place. So, he de-accessed the Port, and accessed it again. Then he helped me administer the chemo. Thank heavens for amazing nurses!

The next day (Friday) the home health nurses were due out again to administer chemo and also to get a CBC (complete blood count) to find out if Matthew was well enough for the weekend festivities. They came right on time, and tried like crazy to do their thing, but again no fluids would move through the Port. So, we headed back up to the hospital. This time, the clinic was closed, so they got us a room for a couple of hours in the ICS (the immune compromised unit where the cancer kids stay when they're inpatient). They came in and de-accessed the Port, which had another severely bent needle (maybe Matthew isn't sleeping well, or something, but he's bending these needles like crazy!). Then they realized they didn't have orders for a CBC, so they called the on call doctor. Justin came to the hospital and relieved me so I could go to work, which I made it in the nick of time. Justin and Matthew were there for several hours due to an emergency in the ICS, but finally, the nurse came and re-accessed the Port, drew a CBC, and helped Justin administer the chemo.

Needless to say, the Port thing is pretty traumatic for Matthew right now. He doesn't even like to let anyone look at it. Even from across the room.

On the bright side, his counts were great! 3600 ANC, which is like a healthy person's ANC. So, he got to go to Grandpa's house for Christmas Eve, and he even played with his cousins for a little while. We did go about an hour and a half after the start of the party, so it would be cleared out when we got there. That meant Matthew got to play with his cousins for about half an hour. It's Wednesday, now, and there are no symptoms of any illnesses, so I think it was worth the risk.

Christmas was great in our house. It was peaceful, and the kids played a lot. We expected it to be a slim Christmas - present wise, and that was okay. Our priorities have changed, and the kids are old enough to understand that. But plenty of angels saw to it that our kids wouldn't know the difference. There were some amazing, touching ways that people helped - from the 12 days of Christmas, to a family who pooled the money they would have spent on an extended family gift exchange and donated it to us instead (the little kids gathered change, and emptied piggy banks! Does it get any sweeter?!), to the daycare kids selling wrapping paper, and a Scentsy girl donating all the proceeds from a basket party. At first, I even felt a little bit guilty receiving all of these gifts, but then I decided that my kids have been through enough this year, and I'm glad they didn't have to have a slim Christmas too. Thank you, angels. You know who you are, even if we don't.

Home Health came out again Monday to place a new Port. Our nurse is learning about Ports, and had never accessed one before, but had a teacher with her. They're both so sweet. Our nurse is pretty young, and works at Primary's as well. Matthew really likes her, and she's so good with him! She gives him her cell phone to play games on or watch movies on while they're doing his chemo so he will be distracted, and she doesn't even mind when he rearranges her apps or deletes things.

Monday was her first attempt at placing a Port, and she missed it by a hair. She didn't want to traumatize him by trying again, so then the other nurse did it. His counts have gone down now, but are still okay. So, we started this week's chemo on Tuesday. It was, again, the best clinic appointment ever. He was happy and cheerful, and there was no fuss because his Port was already accessed. We were in and out in less than two hours - a new record.

This morning, I looked at the Port, and it looks a little skiwampus, so I'm really hoping it's not bent. We've contacted the pharmacy to ask for better needles, but we'll see how that goes, too.

The bright side? After this week, he gets a three week break to recover. He may need blood transfusions in the coming weeks, so we need to keep a good eye on his energy level and coloring (both indicators of low red blood count) and watch for excessive bruising or nosebleeds, or cuts that won't stop bleeding (indicators of low platelets). I know transfusions sound scary, but they're a pretty regular part of cancer treatment - especially for Leukemia since that's cancer of the blood. The thing is - the transfusions aren't as bad as I thought they'd be. They hook up a bag of blood and it works its magic, and a few hours later, he's a whole new person. He's only had one so far, but when I think of transfusions now, I think of them as a stranger's gift of love. To all of you who donate blood, I say thank you. You save lives.

After his three week break, Matthew will enter Interim Maintenance II. This phase is the last before Maintenance (Hallelujah!!) and lasts 57 days. He will have 4 clinic appointments, and they will give the same drugs as in Interim Maintenance I, only in higher doses. They're count dependent, but in a different way than other count dependent drugs. They will give it no matter what, but the counts will determine the dose. There are not any hospital stays, which I previously thought there would be. I'm relieved about that, and I'm sure Matthew would be too, if he understood all of this more clearly.

After those four appointments, he will get a two week break, and then move into Maintenance. That's like the Acute Lymphoblastic Leukemia Holy Grail!

We have big plans for this summer. As we move past each time marker in winter (the solstice, Christmas, New Year's, then Valentine's Day) I can't help but think we're just that much closer to Maintenance. Cue the angelic choir.

We're getting there. One day at a time.

I've decided that the Serenity Prayer, although wonderful for use with the Alcoholics Anonymous program, is very fitting for those fighting cancer, too. I thought it would be good to share.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.

--Reinhold Niebuhr

Also, I wanted to share an image that I just LOVE!

Isn't she sweet?!

Happy New Year's to you all!