Home Health - Take Three

We have finally figured out how wonderful Home Health can be! On Monday, there was much confusion between me, the nurses at the hospital, the guy at the pharmacy that delivers Home Health care meds to our house, and the nurses at the Home Health care company. It was a lot of phone calls. In the end, I left for work at 4:30 with no sure answer about whether someone was coming or not.

I'm not sure when Justin got the phone call, but at some point, someone called him and said they thought we didn't want anyone to come out, and he said yes, we did. Someone finally came out at about 8:00.

On the bright side, they sent out a wonderful nurse. She's older, with pretty, long gray hair, and it's clear that she absolutely loves little kids.

I was at work, and my cell phone rang. I am not really supposed to answer my phone at work, but I was at just the right moment where I could, so I went out in the hallway. It was Matthew. Justin's not even sure how he unlocked his phone, but he wanted to talk to me. The little smarty-pants!

He was scared, though. At one point, when the nurse was getting set up, he locked himself in his bedroom. He also locked himself in the bathroom. This was before he called me. They put me on speaker phone while the nurse accessed his Port. I tried to talk him through it, but it was hard. He cried so much. He really hates that poke. I cried in the hallway at work. I felt so helpless from there. But they got it done, and left his Port accessed. We've needed it every day this week, so it's still accessed.

Here's where the beauty of Home Health comes in. Tuesday was a clinic day. And he had to go under general anesthesia for a lumbar puncture (back poke so they can put chemo into his spinal fluid). Because of the lumbar puncture, Matthew couldn't eat till he woke up after his procedure, which always makes him angry, therefore difficult to manage. Justin couldn't make it to the appointment, so it was just me. I was positive that Tuesday would be absolutely awful.

Typically, Matthew is in a decent mood at the doctor's office until they access his Port. The sad thing is that accessing the Port is the first order of business so we can get the CBC results as soon as possible. So, he's usually mad right out of the gate. Plus, the anticipation of getting his Port accessed has started to make him mad when we're on our way to the hospital.

This week, his Port was already accessed, and the CBC results were already back before we got there. Speaking of that - I was surprised to learn that his platelets were totally normal, so I have no idea why that little cut bled all weekend. Also, his ANC shot up this week to a whopping 3800. He would have been fine to go to that Christmas party on Sunday. But, I do still think it's better to be safe than sorry. Just ask any mom whose kid is spending Christmas in the hospital. I'm sure they'll agree with me.

Anyway, I digress. With his Port already accessed, we got to skip that particular drama at the clinic. Matthew stayed happy. He did crafts, and cooperated with the doctor when she did his examination - even the parts he hates. They managed to squeeze us into the RTU, which is so much easier than the OR, plus it was over an hour sooner than the OR would have been. So, we rushed down to the RTU, and only had to wait a couple of minutes for our turn. He marched right into the operating room, and asked for the flying toy (it's a little helicopter toy that they let the kids play with while they're going under). He sat on the bed and I just held up his back. That was a first. I usually sit him on my lap. And when he started to go under, he knew it, and gave back the toy.

I went to the waiting room feeling peaceful. Another first. It's amazing how much my emotions are tied into his. I just hate it when he's so unhappy. And to see him happy, and cooperative, and his cute little self when we're there makes all the difference for me!

Once in a while he got a little bit nervous. Like when we were waiting for our turn in the RTU, he asked the nurse if she was sure they would put the right medicine into his Port. I can't imagine how he would even have that kind of a thought! I'm not really sure that's exactly what he meant. I think it was more that he wanted to be sure they absolutely had to do the white medicine (that's what puts him to sleep).

Anyway, when it was all done, he wanted Doritos. He's been eating a giant bag of Doritos every day for at least a week. It's almost the only thing he'll eat. A year ago, that would have mortified me. Now, I'm happy he's getting some calories. He finished off the bag of Doritos that we had brought with us - it was about equal to one of the single serve bags. Then, the nurses in RTU recovery gave him another bag, which he polished off as we were settling in upstairs, and the nurses upstairs gave him another bag, which he finished while he was getting his chemo. He didn't eat or drink anything else at the hospital Tuesday.

I win mother of the year award!

Going back up to the clinic, I took him up in a wheelchair, since there were no wagons to be found. I just had too many things to carry and still carry him too, which is a good idea when he's still groggy from anesthesia, so I needed some wheels. I couldn't believe how much more stuff we were leaving with than what we came with! He got the following Christmas gifts from the hospital: A Pillow Pet (this makes his fourth), a hat, a teddy bear, a felt Santa head full of candy, and another hat. Basically, every time he went somewhere, they gave him more stuff! Then, at the end, he wanted to pick another hat, and I said he had already picked one, but the nurse said there are 7,000 hats there right now, and he can really take as many as he wants. So, I let him choose one more. He was so happy, I couldn't resist.

The absolute best part of the day was when we went back upstairs for his chemo! A bunch of my cancer mom friends were up there on Tuesday at the same time. Since he was happy, he wasn't being clingy or needy - he was playing. So, I got to talk with a lot of friends. I met a couple of moms I've gotten to know really well online, too. Matthew made a new friend, and saw a friend he's met a few times before. He played a board game with his new friend (Carson), and his older friend, Tyson, brought him a Christmas present that just made his day. (Oh yeah - there's another thing we brought home with us!) He got a visit from Santa Claus (now he's pretty sure there are two Santa Clauses - little smarty-pants!) and from Annie, the therapy dog, who is very sweet, and soft.

Then, we went out and spent some time in the garden before we left. I have a feeling that has become a new tradition. And that's quite alright with me. As long as he can have some happy memories of the place that will dominate his childhood memories.

Here are some cute pictures of the day!



Matthew and his new friend Carson. They're only a few months apart in age, and they had such a good time together! If you look close, you can see the tube coming out from under Matthew's shirt. He was still getting his Chemo. Carson was done and just waiting for Santa to visit - he didn't know that, but he was having fun, so he didn't notice.








I hope they don't mind being blogged! Matthew and Santa are having a chat about Pop the Pig, which is at the top of Matthew's Christmas list. Carson's too. I think it's cause they show the commercial a hundred times a day on the Disney channel, and these kids don't get out much.

Also, in the picture: Rachelle, the child life therapist, who is AMAZING! Also a doctor whose name I have unfortunately not learned yet, and in the blue gown a nurse in infusion whose name I also have not learned yet (but she's super duper nice, and I like her a lot.) There's just a lot of names to learn at the clinic!

See the Doritos on the game board there? Yep, they were a constant fixture on Tuesday.








Matthew and mommy in the garden outside of the hospital. We were having a good time.























Doesn't he have the best smile ever?! And, of course, there are his Doritos.

Holidays

Well, last night, Justin and the 3 older kids went to his mom's Christmas party while Matthew and I stayed home. Leading up to it, I was looking at the whole thing very matter-of-factly (is that a word???), and didn't feel bad about it at all. But then, after they had been gone for about an hour, and I realized how quiet and lonely the house is, I got really sad. Poor Matthew. He must feel like a prisoner in this home. Lately, it's even been wearing on me, and I go to work, and run errands without him. There is never a day that goes by when I don't leave the house, but most days he doesn't.

He's holding up well, all things considered. He gets kind of emotional sometimes, but he's mostly pretty happy, and accepts all the changes in his life. Lately, he fights me more when it's time to go to the doctor, and he gets more and more agitated the closer we get. He's not the only kid who feels that way. I've heard of kids who come in from Idaho, and they throw up when they enter Utah, just in anticipation of how sick their chemo will make them. Or kids who throw up in the parking lot - again in anticipation. I think that's what's going on with him, too. He doesn't want to go there anymore. He's figured out that they are always going to poke his Port, and he hates that.

I think we're going to try Home Health again. I'll talk to them about it tomorrow at the clinic. If he hates having his Port accessed no matter where he is, then we may as well just do it at home. It'll save us a LOT of driving. Especially on days where he doesn't make counts, like last week.

I've called the clinic and asked for a CBC at home today, if possible. Because he had a cut on the top of his foot that was almost healed, but then on Friday, it split back open and bled more than it should have. I put a bandaid on it, but it filled the bandaid. We've changed them out several times this weekend, and it just kept oozing - for about 3 days. It has finally stopped, and I debated whether I should call or just wait till our appointment on Tuesday, but the other moms all said they'd call. I guess they're right. It could be dangerous if he had a more serious injury and they couldn't control the bleeding. So, hopefully, we'll get a CBC today and see how his platelets are doing.

Back to last night, just as I was feeling the weight of how lonely this life is becoming our doorbell rang. It was the people who are doing the 12 days of Christmas for us. I've been so happy to receive their little gifts each day this week. They have been bringing the symbols of Christmas (like the star, or the angel) along with the scriptures that tie it in. They have been uplifting reminders for me.

It reminds me of my childhood. We used to do the 12 days of Christmas for someone every year. I remember, it was often widows whose children were grown, or families going through a particularly difficult year. Looking back, I'm sure it was a great comfort to them during the lonely holiday seasons. I'm so glad my mom taught me to be that kind of a person. Shame on me for not teaching my kids the same. Although, I did encourage the Activity Days leaders to do it one year, and I got to help with it. It was so fun, and the girls really learned from it, I think. Anonymous acts of kindness are FUN! And they fill you with the Spirit. I like to believe those girls really got something special out of that. Next year, I'll do it with my kids for someone else.

Last night, when our gift was dropped off, I watched a car speed away, and smiled. I remember how exhilarating it was to "escape" unseen. I still don't know who it is that's doing it, but I'm glad I don't know. It's more fun to imagine all the people it could be.

As I read through the scriptures they included last night, I cried my eyes out. I'm struggling right now. And last night was a particular struggle because I hate that Matthew is missing out on Christmas activities with the family. People can't even really come here and visit. But someone has still found a way - a SAFE way! - to let us know that we are loved. And boy, did I feel loved! At the exact moment that I needed it the most.

I hope the giver of these beautiful little anonymous acts of kindness will read this blog entry, and see that they are doing something far greater than a few ornaments and scriptures could bring us. They are showing us the love that only acts of service can show.

Thank you for your love. Thank you for your service. Thank you for teaching your kids to show love through service! And thank you for reminding me the reason for the season. The Lord knows what's in my heart, and He also knows how to comfort me. If I can just turn to Him for help, my load will be lightened, and I will be carried through this trial by angels of mercy.

Hopefully, I'll be able to write another entry in the blog tomorrow or Wednesday to let you all know how our appointment goes tomorrow. Matthew has to go under anesthesia for a back poke tomorrow, but we don't know what time, because they're taking him to the OR since the RTU is full. Wish us luck.

Delay #1

Yesterday, I packed up SO MANY activities for Matthew and I to do at the hospital. He was super crabby all the way there because he hadn't been able to eat anything all day. His appointment was at 11:30, and he was scheduled for sedation in the Rapid Treatment Unit at 1:30 so that he could get a Lumbar Puncture to administer chemo into his spinal fluid. It's a pretty regular occurrence for us, I'd say 1/2 - 3/4 of his appointments are this way. But usually, we do those appointments first thing in the morning. In addition to that, instead of just 1 chemo in his IV, he would be getting 2. And both were new to us. I've seen some chemo treatments that take 1 minute to push into the IV through a large syringe, and some that take 2 hours through an infusion machine. So, I had absolutely no clue how much time to expect to devote to our visit.

We started as usual, with accessing his Port. He hates it. A lot of kids get used to it, eventually, and can get through Port access with relatively low amounts of drama. Matthew goes from a good-natured, happy kid, to a total stranger. He was mad. He smacked the mask away and refused to put it on, he kicked the nurse, and his crafts that he had been working on, he screamed at the top of his lungs over and over. Even after accessing his Port, he stayed angry for the rest of our visit. He was then mad (again) that I hadn't fed him, and kept trying to take the Doritos out of the bag. He kept yelling at me to feed him, and then bargaining with me that he wouldn't tell anyone, or that he would eat it really fast, and promising not to throw up when they gave him the anesthesia (the white medicine).

Oh boy.

And when I wouldn't give in, he cried and cried. I tried to comfort him with hugs, and he screamed at me and crawled under the bed. He stayed there and continued trying to bargain with me. Finally, I found his latest favorite cartoon on my phone (thank heavens for Netflix!), and he cautiously took it from me. He crawled out so he was sitting on the floor right next to the bed, and took the phone.

Rochelle, the child life specialist came back in with crafts to do, but he wouldn't talk to her, so she told him she was glad he had figured out a good way to deal with his anger, and she left. She told me to call for her if I needed more help. She's so sweet and understanding!

While Matthew was in the midst of his angry time, the doctor came in, and we talked about the second half of Delayed Intensification.

Here's the scoop:

• No more steroids! Yay!
• He will take a chemo pill every day, for 14 days, which they refer to as 6TG. This is similar to the 6MP, which he took in pill form during Consolidation. He had no noticeable side effects from the 6MP, so I'm not worried about the 6TG.
  
• For two weeks, on Tuesday, Wednesday, Thursday, and Friday he will get a dose of a drug referred to as Ara-C, which is similar to the Doxorubicin he got in the first half of this phase. It's less intense, the doctor said, but since he's getting it so many times all at once, it worries me anyway.
• On the first day of the second half of DI, he'll get Cytoxan, which is similar to Doxorubicin.
  
• On the first day of the second half of DI, he'll have lumbar puncture with chemo administered into his spinal fluid.
  

That's a pretty heavy two weeks, with Christmas right smack in the middle of them.

It would have been with Christmas right at the end of these treatments, but after I learned about all of this from the doctor, and she handed out prescriptions and all, she came back and told me it was all a moot point today, because Matthew didn't make counts.

What that means is that his ANC (Absolute Neutrophil Count - the white blood cells that fight infection) was not high enough to withstand this chemo. It's still very low because of the Doxorubicin 2 weeks ago. It's 300, and they need it to be 750. So, they're going to wait another week to start the second half of DI.

So, basically, this trip to the hospital was just to get his CBC. But I still feel like it was productive, because I learned the next steps, and before our appointment, I felt like I was going into it totally blind. Also, I asked her about a rumor I'd been hearing among my cancer mom friends.

Some of the ALL moms have been told that during IM 2 (which is the next phase Matthew will be in) their cuties will have scheduled stays in the hospital for chemo. They do that with most of the other types of childhood cancer. The chemo is so harsh all the time that they keep the kids in the hospital for a few days to a month each round to watch the child as they recover from the chemo. Thankfully, Matthew hasn't had to endure that. Anyway, some ALL moms have been told their child will have to do that during IM 2, and some have been told they will not. We're trying to narrow down how the doctors make that decision, but we haven't been able to figure it out. We're aware of who is on what study, and who is not on a study at all. So far, the other moms whose cuties are on the same study as Matthew have been told they will not have an inpatient stay, but yesterday, the doctor said Matthew will. More confusion among the moms, and I honestly wonder if she had her information correct (she seemed pretty confident, but to be fair, she is still learning) but if she was correct, I'm kind of glad they're planning it for him because it increases his odds.

I didn't get much time to talk to her about it, but I'll ask more questions next time.... I always say that though! In all honesty, that can be very difficult when I'm trying to keep Matthew under control, too. He's usually pretty mad before we do any talking because he's already been through the Port accessing, and then the doctor has done her exam, which to him means more poking and prodding.

But, what it came down to was no chemo this week. You'd think I'd be happy about that, cause the second half of this round is going to totally suck. But I feel oddly hesitant about taking an unscheduled break. Like it somehow decreases his odds to lose momentum like that (the other cancer moms don't think so, though, and said their kids have all had a lot more delays. They were surprised this was his first.) But also, I think it'll add another week to his treatment at the end. So, it's not like it's one week less for him.

So, to switch gears, I realize it's been a long time since I've shared pictures, so I found a couple of super cute ones. Enjoy!

Matthew with his punch balloon, which he got to choose out of a prize box. There are donations like crazy at the hospital. It brings me to tears to see all the generosity. When you first walk in, there are stacks and stacks of boxes filled with donated toys and blankets. In the clinic, it looks like it rained hats. There is a box of new toys to choose and a box of new blankets. Matthew got to choose one of each.

This picture was taken before his Port was accessed. He didn't smile again until he was happily eating Doritos.

Matthew at the entrance to the garden outside of the hospital. Acorns have a special significance to a cancer mom hero of mine, and I took the picture for her. They signify hope because you plant the acorn in the hope of allowing new life to grow. I thought it was appropriate to have at a place of healing - especially a place of healing for children.

Sleeping so peacefully. Isn't he precious?

He's had a rough few weeks, and he needs lots of sleep to recover, but this picture gives me hope for two reasons. See how chubby his little cheek is? He's still at a healthy weight. Also, see how pink his little cheek is? That means he has enough red blood cells right now, and doesn't need a transfusion. Most kids would have needed one by this point in this phase, but so far, his body is making plenty of its own.

Long Week

Wow! I can't believe I let another week go by without posting!

It really was a long week.

A couple of entries ago, I talked about the stomach flu going through our house. Well, Matthew caught it. He was sick for a couple of days, and on Monday, he stopped eating or drinking all together, so I called the clinic. They told me to go to the emergency department. That was a new experience for us, although I know plenty of other moms who've done it plenty of times.

I was nervous to go to the emergency department because that's where all the really sick kids are. Plus, once you have the cancer diagnosis, it's much more comfortable to go to the people who know about cancer kids. But they were really good to us. My nerves were unnecessary.

When we got there, they were already expecting us, and they took us right back to a triage room. We never sat in the waiting area. After they did all the weighing, and medical history, they took us back to a regular ER room, and we waited there for our nurse.

She was very sweet, and when it came time to access Matthew's port, she was very nervous. That was one of my initial concerns. They don't access ports often in the ER, so they aren't as skilled at it as the clinic nurses are. We could tell our nurse was nervous, but she brought someone with her to help - just in case. As soon as she drew back and got blood, she sent her helper away, but when she added the second container, it wouldn't draw back anymore. She had me help her call the helper back, and they flushed it, and tried again. It worked like a charm. She was so nice, through the whole process, even with Matthew flipping out the whole time. (He HATES getting his port accessed.) Her hands were shaking as soon as it wouldn't draw back anymore, and when she was done, you could see the relief on her face. But I thought she did a great job.

The doctors came and checked him out, and they started him on some IV fluids. When they CBC results were back, it showed that he was pretty dehydrated. The fellow (that's a doctor in their post-college training) came in and said they were on the fence about sending him home or admitting him, and let us decide. We felt that we should bring him home, because that's where he wanted to be. He really hates the hospital lately.

One of the things the fellow said that struck me was that if he started acting confused, we should call. It struck me because he was acting confused before we went in, and we thought it was because of the chemo wreaking havoc in his body. But I saw a difference as soon as we were in the car on the way home. He was finishing his sentences properly again, and he was happy and perked up. It's amazing what a bag of IV fluid can do for a dehydrated 4 year old!

So, going forward, here's what's coming:

This Tuesday (the 13th), Matthew will go in for the first of 8 doses of a new chemo. I wish I could remember the name of it, but I'll add that later. It's another big gun. Nasty stuff. It's going to make him feel crappy, make him nauseous, and knock his counts down drastically. He'll probably end up neutropenic again before the year ends. The 8 doses are crammed into two weeks. 1 dose each on Tuesday, Wednesday, Thursday, Friday, and then repeat again on week 2. That brings us to the day before Christmas Eve. The second day after his chemo, even when it's milder stuff, is always the day you really see it kick in. So, Christmas this year is bound to be rough for him. It's crappy, but there it is.

Cancer sucks.

After that, he will get a 3 week break, and start a new cycle. Interim Maintenance II. It's count dependent (meaning he has to have at least a 750 ANC), and they say a lot of kids don't start on time. That's how long his counts will probably be down.

Interim Maintenance II is mirrored after Interim Maintenance I, only it's higher doses. Among the moms in my support group, we're hearing different things from doctors, so I'm not positive, but, I guess there's a possibility that he will be inpatient for some of his treatment during this phase. 4 days each, and I think 2 times, but maybe 4. This would be to receive high dose chemo that he needs to be monitored after, and he would have to meet counts to be able to go home afterwards. I'll be asking his doctors about that this week to find out more, and if it happens it won't be until at least the middle of January, but more likely February or even March. The upside to this happening is that it would increase his chance for a cure. Anything to increase that possibility is good, even though it feels scary. The downside is that it's more super potent chemo, and that's really hard on him.

After Interim Maintenance II, he goes to Maintenance. That is my light at the end of this dark tunnel. I've been told that it can be difficult to go through Maintenance because everyone thinks treatment is more or less done, so they expect you to be ready to live a normal life again. And they expect the child to be able to act and behave normally, as well as thinking that because they look healthy again, they are. That is not the case.

Maintenance is still treatment. He will be taking chemo every day for roughly 2 1/2 years during Maintenance. The chemo is in the form of a pill. He will also go to the clinic once a month for treatment. I don't know for sure all that happens on those clinic visits, but I know there are regular back pokes to put chemo into is spinal fluid. I think there is IV chemo treatment on those days, too, which means higher doses. He will also have more steroid pulses in Maintenance. Counts are always a struggle in Maintenance, and it's hard because you aren't going into the clinic every week for a CBC, so you never really know what the counts are.

Even so, I look forward to that. It's a lot less time spent at the hospital, and it will be possible for us to try and get away for a while when summer comes, if we can swing it. Once he settles into Maintenance, we can consider putting him back in daycare, with real caution. He misses his friends so much! And it might enable me to work more hours. It's just the return of a little bit of normalcy to our hectic lives that I really look forward to.

We'll never be the same, though. One of the moms in my support group said it perfectly today. She said, "I know too much." It's true. Even when our nightmare is over, we'll always be too aware of all the other people in the thick of it. And so many people have it worse than us. This weekend, I learned of a 19 year old girl who is about to lose her battle. She beat the cancer, and then relapsed, and now cancer is going to win. How does a family ever come back from that?

We'll never fully leave it behind. We can never be what we were, and relapse will always be scary to us, and the thought will always lurk in the recesses of our minds. Every time someone tells us their kid is sick with a fever, or having leg pain, we'll think it's cancer, and want to scream to get that child checked. But, the truth is, hundreds of people figure out how to move forward every year. We'll find our place in the bigger picture when we're ready.

Still, the price we have to pay - all of it - is worth his good health. No matter what happens, I'm proud that we have been able to adjust life to give him the best chance possible at beating this.

Thanks for the continued support and prayers.

Hair Loss - Take Two

I play with Matthew's hair a lot. He doesn't even seem to notice it, I do it so much. I think I did it a lot before he had cancer, but now, it's probably on the verge of total weirdness. Since he started this current phase of treatment, I've gone back to pinching it to see if I can pull any out. The last time he lost his hair, that was my first indication. Over the course of the next week, he lost almost all of his hair.

This morning, I got a pinch-full of hair. Then another. He's definitely losing his hair again, which I expected. Within a week or so, he should be totally bald - much more than the last time. He'll lose all of his hair, but he's also likely to lose his eyebrows, eyelashes, and all of his body hair.

A good friend of mine, who is a photographer, offered a few months ago to do our family picture, but we couldn't fit it into our schedule. A few weeks ago, I asked her if she would let me take her up on the offer now that he's going to lose his hair. I've been told that even though it doesn't seem like it now, I'm going to want to remember what he looked like bald. Lots of other cancer moms have told me I should get professional pictures of it, if at all possible. The time he'll be bald will come and go quickly, and someday, when I'm ready, I'll want to remember. They're right. I know they are. It's the same reason I want to print out the blog when we're done.

So, be prepared. Next time any of you see him, he will probably have a soft, shiny head.

Uh - Nevermind...

Wow, what a weekend!!

So - minutes after the last blog post, the nurse at the hospital called and said that Home Health was not coming after all. They wouldn't be able to get someone out until after 5, and then there wouldn't be anyone at the hospital to analyze the results of the CBC. So instead, they asked us to come on up to the hospital.

Matthew cried through the whole visit. It was - not - fun! The poor kid just wanted to be home, sleeping. The nurses were so kind, though, and quick.

His red blood counts were fine, though. Actually, they were surprisingly high. He didn't need a transfusion. Most people's initial reaction to that is relief, but truthfully, it would probably have been better. A transfusion would have made him feel better sooner. But you don't want to do too many of them. I guess they become less effective over time - or something along those lines.

So. What was plaguing him? I bet most people could guess pretty quickly. It's been the subject matter of the blog for a few weeks now. It's the Doxorubicin. It hits its most horrible point 7-14 days after the administration of the drug. The nurse had a special word for it, but I can't remember it. Anyway, the day he got the Doxi this week, was day number 14 since the first dose, and day number 7 for the second. So, three doses were wreaking havoc at the same time, and it kicked his butt. He slept most of the time for a whole day, waking up only to eat, then he would be back to sleep within an hour.

So - that was Friday. After we left the hospital, I went to work. Friday night, Justin was sick all night with the stomach flu. Matthew was restless all night too. I got almost no sleep between the two of them. I felt awful - they were so miserable! Plus, I had to go back to work on Saturday, very early in the morning. Justin couldn't take care of Matthew - I didn't particularly want Justin anywhere near Matthew, to be honest. So, I woke Alaina up at 6:30 am to take care of him so that I could go to work. She's such a good kid. Not many 16 year old girls would give up their Saturdays that way. All three of them took turns taking care of Matthew so that Justin could rest. Finally, at around 1, Alaina called me on my cell phone. She said Matthew had been screaming and sobbing for me for 2 solid hours. I could hear him wailing, "Mommy!" in the background, but he didn't want to talk to me on the phone. He wanted me home.

So - even knowing that I am out of time off this year. Knowing that I may very well get written up for missing work, if my FMLA claim for it is denied, I left. I called it into the FMLA people on my way home, and I left. It'll eat at our Christmas budget, but I couldn't stand how much he was suffering. Alaina wanted me to text her if I was coming home, so I did. She said he stopped crying then, and cuddled with her by the front window while they watched and waited for me. When I got home, he came straight to me. I took off my coat, and we sat right there on the floor cuddling for at least half an hour, and he fell asleep. He hasn't let me out of his sight since then. This is the first time I've had a chance to update the blog.

He seemed perked up this morning, but still insisted that I do whatever he's doing. He doesn't like it when I go to sleep.

This afternoon, he's not feeling very well, but it does seem that improvement is coming. Thank heavens we don't have to do anymore treatments until December 13th.

At least we didn't have to struggle with Home Health. We'll figure it out in two weeks.

Thanks for all the inquiries, and prayers. It means a lot to know how many people are thinking of us. We're getting through it. He's a great kid, and tough as nails. We'll get through this. We expected this to be a hard time, and it has been, but we're halfway done now. At least there's that.

Home Health - Take Two.

Matthew has been on quite a roller-coaster this week. We've had food marathons, lots of bacon and pizza, supercharged emotional mood-swings, and sleepless nights. I was bracing myself to go to work tonight and tomorrow on no sleep. Then, yesterday afternoon, Matthew went to sleep at about 2 pm. Since then, he sleeps for long stretches, only waking up for an hour or so at a time to eat in large quantities. Then he goes back to sleep. Most of the time insisting that I sleep too. I'm all slept out, and that's really saying something!

Finally, I decided I better call the clinic. The nurse (Tricia, who I LOVE) called back and said she thinks we need to check his counts. We were sure he'd need a transfusion on Tuesday, and then his Hematocrit was fine. More than fine. Really good. But it was weird, because he's been really tired, and sleeping a lot until the steroids kicked in, and now even on the steroids. So we're going to check again.

Since this is just for a CBC (complete blood count - they'll draw his blood to find out his levels), we decided to try Home Health again. The first two times were not good, and I don't have high hopes, but I have friends who absolutely love their Home Health nurses, so I'm going to give it another shot. It sure would be more convenient!

So, here's the Home Health scoop. Matthew's protocol often calls for a CBC the day before treatment because a lot of his chemos require at least a certain ANC (absolute neutrophil - that's the infection fighting white blood cells) count. Most people have Home Health come out the day before and draw a CBC. Then you know if you met counts or not, so you don't waste a trip to Primary's if the counts are low.

We opt out of Home Health, and instead, we go to our appointments about half an hour earlier, knowing we will have to wait an hour for the CBC results before he can get any chemo. We do that because the two times Home Health came out were disasters. The first time, the nurse said she'd been doing Port accesses (that's his implanted central line, which they have to poke a needle into) for 14 years, and she never misses. She poked him 3 times, and never got blood. So we had to get the CBC at the clinic the next day anyway. The second time, they sent a guy who works at Primary's, and is comfortable with port placement, but new to Home Health, and a nurse who has worked for the company for a long time, but was learning how to access a port out together. They were teaching each other things. The nurse from Primary's poked him 3 times, with no luck. When he stopped trying, he realized the needle was sheathed, and that's why he wasn't getting anything, but Matthew was NOT about to get poked again. So then we tried to get enough blood from his finger. He poked him and kept on squeezing Matthew's finger, getting tiny little drops of blood until the bleeding stopped. He didn't even have a tenth of what you need for a CBC. He wanted to poke another finger, and I said no. So, we got our CBC at Primary's the next day, again.

Both times, it was way worse to even try to access him while at home, and I think it's because home is supposed to be the safe place, where he doesn't get poked.

The following couple of weeks were uncharacteristically difficult with his port. He had a lot of extra fat on his chest, so the port was difficult to access in the first place, and even after it was accessed, it was sluggish. Finally, one day at the hospital, the nurse couldn't get more than a few drops of blood from it, so she put something in to clean it out. It took an hour, and then a good, strong flush, and then it worked like a charm. There have been no problems with his port since then.

The thing is, in two weeks he has to get IV infusions of a new type of chemo for 4 days in a row, and then again the following week. Those infusions can happen at home - he only has to go to the hospital for a check up once a week. So we need to figure out the Home Health thing. The nurse from the hospital called the pharmacy that we were working with, and they told her both times, the service had been outsourced, and that this time they'll send one of their own nurses.

Sigh.

So, we'll try it again.

I have friends who really love their Home Health nurses. They get the CBC the day before, and leave the port accessed, so they don't even have to get accessed at the clinic. It probably makes clinic visits SO much faster! I would really love it if we can get it to work out. So, I'm crossing my fingers that today is the day.

If I can find the time (I work for 14.5 out of 24 hours, starting at 4:30) I'll update the blog tonight or tomorrow to let you all know how it went.

In the meantime, please keep poor little Matthew in your thoughts! I hope the reason he's so sleepy is because he needs a blood transfusion, and not that he has some sort of infection. I hope the port access goes smoothly, and isn't traumatizing to him.

I hope the nurse can become my new best friend, and I can be converted to Home Health fandom!