Good Old Fashion Update

What happened to September?!
I feel like I blinked and it disappeared.
Even with that crazy disappearing act I tried hard to go out of my way to find ways of doing little acts of service. There were a few times when I'd be trying to help someone and someone would come and do the same for me. People are too fast and too good! I was amazed at how I could find things, when I really took the time to look for them.
I'll be honest, though, by the end of the month I felt like the only "extras" I was doing were things for my family. Which, as I think back, was just as important as helping strangers and friends and family outside my home. It's about being kind to everyone!
And now we're in October! And October is Down Syndrome Awareness Month! That will have to be another post for another day, though.
Today feels like a good time for a Mary update.

Chemo
Last Wednesday was "Chemo Day" for the Little Miss. She loves to go to the doctor, and asks to go all the time. I'm not sure if it's because she gets to watch a movie on the way, or if it's her popularity once we get there. Back to Wednesday, we had a bit of a rough start to the appointment. Computers down, tech issues, accidents in pants, despite it all we were still there our average 3 hours. As always Dr. T. was thrilled with her progress and how she is looking. However her nose has been running something fierce so she did a viral culture (she has a cold) and put her on antibiotics just to clear out any infection that could be resting in her sinus. She also has had some suspicious spots on her tongue so she put her on something for that too. The week after her "Chemo Day" becomes "Steroid Week." It's about as fun as it sounds. Twice a day she gets a steroid, with pepcid once a day to help her tummy. It makes her extra crabby. We've come to just be ready for it and give her a little leeway when we can. And given the couple of extra meds she was on, in addition to the steroid, she really handled it like a champ.

School
We're about 6ish weeks in and so far she is doing great. We all feel, the teacher + parents, that having her in Kindergarten again really is the best fit for her. I feel so blessed that they put her with the same aide she had last year. The two of them together make an awesome team. Each morning when we pull up to the school Little Miss starts saying her name "Cagaga" (Mrs. Carriaga) then says "bye mom!" She is also starting to write her name! In the past she has shown little interest in writing anything more than circles. But she is stretching and growing and I love it.

Hair
Because, why not? In June her hair started to fall out again. In all honesty I was quite bummed. Not everything fell out but it did thin quite a lot. But it's tarting to come in again! She's got her wispy longish pieces but now has some shorter stuff filling in. This morning I was noticing that it's just about long enough that I can slide a clip into it. I know hair is so trivial considering all that she's been through but I can't help it. I've been thinking about when she (and her sister too) were babies and I would get so excited when their hair was finally long enough for little piggies. I get to experience that all again. It's the silver lining of it all, I feel like.

Other News
She's lost a tooth! Last week it was looking a little scraggly and so the other night we sat her down, and with the help of her brother holding her hand, we pulled it out. This is actually her third tooth she's lost. The first two came out during her hard months of chemo and so they didn't get much attention. All the other stuff was taking over. She looks so adorable, of course, with a hole in her top teeth. I've been trying hard to get a good picture but with the extra grouchiness it's easier said than done.

Have a fabulous week!

Awareness Month

September is both Childhood Cancer and Leukemia and Lymphoma Awareness Month.
To celebrate Mary and I were up at midnight. I held her while she threw up. Chemo does that to her every now and again

I've been thinking a lot about this month of awareness. About how our lives have been affected this past year by those heavy hitters. It has changed just about every aspect of our lives. It has created a new normal. It has changed our perspective. It has, I hope, made us just a little bit better.
Knowing that September is awareness month I've been trying hard to think of something I could do.
As I've thought back on this past year one thought keeps coming back. There is so much goodness in this world! A year ago we were blown away by the generosity and kindness of our family, friends and community. It was incredible to watch people pull together. Sometimes it's hard to accept so much help but I came to realize how blessed we are when we help others. And in that moment it was my job to be the receiver.

So I have this idea.
Can we make this month about sharing that goodness that can come when those close to us struggle? It doesn't have to be something big. The smallest things can often make for the brightest days.
Send a note, in the mail, to a friend
Pay for the person behind you at Starbucks (or anywhere)
Leave hidden notes for your family to find
Take cookies to someone who needs them
Hold the door open for someone coming behind you

The possibilities are endless! And feel free to share your experience.
Tag #orange4littlemissmary on Instagram or Facebook, to spread even more goodness.
I think we all need reminders sometimes of that goodness in the world.

One Year Later

It is so hard to believe we are one year into this journey. It's hard for me to even wrap my head around it.
While we didn't receive her official diagnosis until the 19th, both David and I feel like the 17th is the day it all "went down." So it's today that has us thinking, today has us weighed down a little.
I find myself feeling "all the feelings" today (and yesterday really). While I do feel a tremendous amount of gratitude, and relief I also feel overwhelmed and exhausted. But mostly a little disbelief that we've made it to this point. A year ago I couldn't even let myself think this far. And now we're here.
I've been thinking a lot about what we were doing one year ago. In the morning she was so off and by late morning she had a fever. Combined with the petechial rash I'd found a couple of days before my "mom alarm" was going so crazy I couldn't even think straight. It wasn't until David said, "take her in." That things came into focus. I knew I needed her to have her blood drawn, that was the only way to either calm my fears or figure out what we were dealing with. The ER docter was confused at the platelet count of 8, but I wasn't. Then we had to wait while he figured out where to send us. I have no doubt that he was lead to our oncologist, who was quick to say get her here now. I'm thankful that everyone was OK with me driving us. The doctor came to the hospital that night to meet with us and work out a plan for what came next. I felt so calm at that point. Perhaps it was the calm before the storm.

I've been going back and reading through our days when she was first diagnosed and in the hospital for 10 days. It seems so so long ago and we feel so far removed. Sometimes I think I had it more together then. And at the same time I feel that somewhat discredits the whole year and what we've been through. A year ago I couldn't have not predicted what this experience would do to me. The effect it has had on my mental health, I do feel like that was something I wasn't prepared for. I like to to think I'm moving in the right direction. However I know that I will always be affected by this experience. I feel as if I will always be nervous when someone has a fever, that I will constantly be checking for those tiny red spots that started this whole thing. With each little bruise and each little illness a part of me will wonder if it's something more. I wonder if the start of each new school year will always bring this flood of emotions. As you can tell I'm still trying to make sense of it all. Which is what I'm allowing myself to do.

So how is Mary now? Our usual response is, "she's good!" Considering where she was at a year ago, she's really good.
Here's a quick run down of Little Miss.
She will ask, now, to go to the doctor. Something we find hilarious and sad at the same time. When I took the kids to the dentist the other day she was ticked that she didn't get a turn. When we walk into the cancer center she acts like she owns the place. When we're done with our visit she will say "bye!" to all the other patience as we walk through the treatment center. She is currently a fan of ramen noodles, but I've been trying to limit her intake as her weight is something we are constantly mindful of. She recently moved back into her bedroom she shares with her sister. Some bedtimes go better than others. Sometimes she keeps her sister up with her chatting and humming. And sometimes she falls asleep on the floor, half in and half out of her room. On Thursday she starts Kindergarten, again. (After many longs weeks of weighing and re-weighing we felt it best if she repeat Kindergarten, giving her a chance to actually experience it.) Last year, leading up to that first day of school, when I'd ask her if she was ready she would say "no." The past couple of weeks she has usually responded with a "yes!" Progress is good.

As far as treatment. She still has daily chemo that I give her. Then once a month we go to the cancer center for IV chemo. Her immune system is still a bit fragile. In June she gave us a run for our money when she developed a fever (I don't like those things) and we were in the hospital for a few days. We found out she had the flu, but there was a concern over her port being infected. Thankfully that wasn't the case. It was a long few days, just the same.

Since we sent the big kids off on their first day of school this morning the girl and I are going to bake cookies to share with them when they get home. Then we will spend the afternoon doing chores and just hanging around the house. I recognize that it's not that exciting but thinking back to where we were a year ago it feels all kinds of right.

The Latest Breakdown

She's got two months (how did that happen?) of school under her belt so I thought it was high time for an update.

School
So far school is going really well. Initially she was just there for a few hours a day. Until right before the kids went for recess and lunch. Just a couple of weeks ago we extended her day until after lunch. So she has recess, lunch and just a little time after that. She sometimes has a difficult time with transitions so having her able to go back to the classroom after lunch helps her get into that routine.

However by that time of the day she's pretty much done. We're taking things just a day at a time waiting until everyone feels she's ready to add on more time to her day.
She's pretty tired by the time she comes home. Which I can usually tell by her requests for, "iPad and popcorn." When she has more energy it isn't uncommon for her to spend a little time on the iPad then abandon it and wander throughout the house, usually ending up in her sisters room. Fortunately she has a pretty amazing sister who doesn't seem to mind too much when little sister gets into her stuff.

 

One of her favorite things to do at school is visiting the library. She loves to go and check out books. She's recently discovered they have "Pete the Cat" and it has come home the past three nights. She also loves the swing, that's an added bonus of having recces and is often how I convince her to wear tennis shoes (as opposed to her "Calle Boots, aka her pink cowboy boots).

Hair
I cannot get over how fast this girl's hair is growing. I will admit there was a time a couple of months ago that I thought her hair might never grow back. Once it started to come in, for me, it really came in fast.

The texture is so soft. It's not uncommon for some of us around here to just sit and rub her head. The interesting thing Dr. T. told us that after she's completely done with chemo it will come in even different than it is now. It's hard for me to imagine that.

Treatment
Right now Little Miss is in the Maintenance Phase of her treatment. We'll be in this phase for two years, fingers crossed. This means every 4 weeks she has IV chemo, plus lots of other chemo meds that I give her at home. She has one she takes every day, another she gets just on weekends, another just on Monday's. Then, the same week as the IV chemo, she goes on a steroid for about a week (and I have to give her Pepcid when I'm giving that to her). In addition to all of this every three months in addition to her IV chemo she'll have a lumbar puncture with chemo placed into the intrathecal space. If you think that might be difficult to keep it all straight, then you think right. I use the calendar and alarms in my phone to help me keep track.
Last week was an IV chemo week, which means it was a steroid week. It is so rough on her and it was the cause of her becoming too weak to walk last fall. This past round of the steroid seems to have really weekend her legs a lot, which has made this week a little rough on her. Fortunately she's in a much happier mood than last week. Which makes things easier on everything.
I have to say I've been a little panicky this week with her legs being so week. For a couple of days, at school, they pushed her around in a wheelchair. I've been having flashbacks to about two weeks before she was diagnosed with Leukemia she was having leg pain and limping around. I took her to have an X-ray thinking maybe she broke something. Nothing was found so the doctor thought she might have a sprain. Then fast forward two weeks later and we learned that the leg pain was actual cancer growing her little bones. So needless to say seeing her hobble around this week has been rough on me. I've spoken with the doctor's office a couple of times. The first time they assured me that this was to be expected with the high does of steroid she had last week. Today she does seem to be making some improvement, which has made me feel a little better. Today's conversation with the nurse we determined to wait out the weekend to see how she does. If there isn't much improvement then most likely we'll have an extra visit to make next week.

So that's the latest in a pretty big nutshell.
Happy Friday!

Back to School

Wha???
That's how I feel.
I suppose I should back up.
After those two crazy weeks in January we had a nice little break from chemo. She was scheduled to go back February 2 for the start of Maintenance but her counts had not recovered enough so it was pushed back a week to February 9.
So what is Maintenance? Basically it means she's down to once a month chemo infusions. And the rest of her chemo meds (three different once that have three different schedules, because of course.) I give her at home. Every three months she will have a lumbar puncture, where chemo is then placed into the intrathecal space. In other words a complete change of pace! To be honest I'm still trying to shift my thinking. It's such a change I'm not sure what to do with myself.
On the 9th while she was sedated for her lumbar puncture we had requested that she have another bone marrow biopsy. Mainly for peace of mind. After week of waiting we finally got the results that everything looked normal and healthy. It was a relief and yet I didn't feel as relieved as I thought I would. I wonder if I'll ever feel such relief again. However it did give us a sense that we are moving in the right direction. That everything we have done to get to this point has worked. That physically she is ready for some new things (however unready I may feel mentally).
Which brings us to today. A month or so ago I had chosen today as the day that she would start back to school. I told the school, talked with her teachers and then hoped it would take a long time to get here. On Friday Mary and I visited her class and passed out Valentine's and ate cupcakes. It was the perfect way to ease into it. She was happy to see her class and ready to leave after a little while.
I've been asking her all weekend if she wants to go back and she says, "yes," every time. To the point that she has gotten tired of me asking her. Incidentally, before school started in August I asked her the same question and her response was more eye roll and avoid the question. So this really is a step in the right direction. She's not one to hide her emotions.
Last night we set out her clothes and this morning when I woke her up she sat right up. I got her dressed then went downstairs and she even ate half a mini bagel (much more than she's usually willing to eat first thing in the morning). I think she was thrilled to be getting ready along side her brother and sister.

For the school drop off she and I hung out in the car a little bit before going into the school. I walked her to her class and as soon as she walked in she said, "hi guys!" I hung out for a little while as the teacher asked that I stay and talk to the kids a little bit. She has tried to prepare them for Mary's return, she found and shared with them the book Kathy's Hats, as most 6 year olds do they had many questions. She asked that I come and answer some of them. I had been wracking my brain to figure out how to explain what a portocath was to a group of kindergartners but all they really wanted to know had everything to do with Mary and much less to do with things like leukemia and chemotherapy. It was good for me and hopefully for them too.
When it was time for me to go I tried to make my exit discrete but the girl caught on fast and came right too me. We hugged and I told her that I had to go and she needed to stay with her class, she wasn't too thrilled at first but finally agreed and sat down on the carpet with them. But she saw me putting on my coat and wasn't happy about it. She came to me again and we talked again and finally agreed to stay. I then left as quickly as I could.
In a little over an hour I will be picking her up. For now we will do half days. Which will ease us both into this new routine.
In reality, though, she is where she needs to be. I've known that all along. I was reminded of it, though, when walking into the school and I saw the sign out front welcoming her back. I was reminded again when I saw just about every teacher and staff in an orange "Supporting Little Miss Mary" t-shirt or with some other piece of orange. I was reminded again when so many kids were wearing the same shirt, or were quick to say hi to her as soon as we came in. And again I was reminded when the principle came and gave me a hug. This is so hard! And it may continue to be, however I couldn't find better hands for her to be in.

January Week 2

I'm finally taking a moment to play some catch up.
I have to go back a ways to last weekend (almost a week and a half ago). At the end of the first long week by Friday night/Saturday morning Mary developed a bit of a low grade fever. It would come and go but it was enough to make me a bit on edge. Fevers take on such new meaning when your child is undergoing chemotherapy. By Saturday night we decided to call about it. The down side was that I had a cough and had lost my voice so I had to hand the reigns over to David. This was huge for me and my control issues. The doctor felt she needed to be seen and tried to get us lined up at the ER close to home but it just wasn't happening. So David and the girl took off for the hour drive to the hospital that we have become all too familiar with. I tried to send them prepared as I could and tried not to think about the possibility that they might keep her over night. Thank heaven my mom was here to distract me. I waited, sort of not patiently, to hear from them. David was so good to send me texts to let me know what was happening. I had warned him to be nice. He would say things like, "they want to do..." and I would say "yes" or "no!!!!" Unfortunately there were a few "no!!"'s, and me not being there and having not voice made me go a bit crazy. And by "bit" I mean I was besides myself. The ER doctor supposedly had consulted with the oncologist but given the tests they wanted to run, and some they ultimately did (doing a catheter for a urinalysis, so not necessary!), didn't make me feel like they were following along too well with what the oncologist was asking of them. In the end they accessed her port and ran some antibiotics and they were home safe to me by about 3 in the morning. Needless to say none of us slept too well that night. But the antibiotics did the trick, thankfully, and she has been fever free since then.
The following Monday we were there again for the start of week 2. I shared my feelings about their experience in the ER. I really feel like there should be some sort of protocol for these kiddos who are undergoing chemotherapy. It's not your average fever, people. Apparently there is, it just wasn't being followed too closely.
Back to Monday, it was a long day to start our week. As expected her counts were low so after her chemo infusion we headed over to the hospital for a blood transfusion. She, as always, was such a trooper. Her food of choice, for the whole week really, was chips. We would walk into the cancer center and she would start asking for chips. Fortunately they have vending machine with her flavor of choice, nacho Doritos.
By Thursday she had begun to develop a few spots, petechiae, which indicates her platelets are low. They drew some blood and they were low, just not low enough for a transfusion. Since the particular type of chemo they've been giving her during these past two weeks is meant to lower counts, but sometimes not until 7 or so days after, they are anticipating all the lowness and transfusions. Tomorrow morning I will take her for a blood draw, here in town, which may mean another trip for blood or platelets or both.
Aside from her chip consumption her appetite has been so-so and drinking the same. However over the past couple of days her mood as improved greatly. She's back to walking holding one hand, and has started to entertain the idea of taking steps on her own. She's laughing, music to my ears, more and is more chatty.
If her labs look alright (she'll also have a blood draw next week) the first part of February she will begin Maintenance. What that means will have it's own post, once we get there. We've requested that she have another bone marrow biopsy at that time, she will already be sedated at her scheduled lumbar puncture. It's more for our peace of mind than anything else.
From there normal life will almost sort of start again for us. I'm having all kinds of anxiety thinking of it but trying to take deep breaths and focus on one thing at a time.
As always we will keep you posted!

Here's a few shots from the last week or so.

We were waving her bag of chips around to get her to smile, worked like a charm

We celebrated the end of the very long two weeks with a donut run

Sending SuSu back home, it was the perfect week for her to come

January Week 1

We are in the midst of two weeks of crazy, at least that's what I'm calling it.
This week and next week Mary has chemo infusions for days a week.
At the start of this, on Monday, she had a lumbar puncture. We opted to spend the night in the hospital to give us one less day of travel. It was a long day and a long night. I never go to the hospital thinking it will be restful, but still. She had a difficult time settling down. Then somehow her port access became dislodged. The nurse came in and tried to flush it and then pulled the bandage back, it looked ok. She felt the next option was to call IV Therapy (aka not my favorite people). After a few minutes with her fidgeting it fell out, or Mary "helped" it fall out. I held her for a few minutes and she feel right to sleep. Then I went to speak with the charge nurse about just leaving it out until morning. But she reminded me that it wasn't heparin locked so it had to go back in tonight. Otherwise the answer would have been yes. I wasn't even thinking about the heparin (maybe because it was 1 in the morning). Heparin is an anti-coagulant and each time before she is de-accessed, they push some in. This keeps clots from forming in the port. We then discussed some options. I told them, charge nurse plus our nurse, if they were comfortable starting ports than I would prefer them to IV Therapy. They were just fine with that. I had to put the numbing cream on her and then it had to sit for about 30 minutes. Remember, though, that I had just gotten her to sleep? Yeah, that. Of course the accessing part didn't go as smoothly as I'd like (it's kind of wiggly, which some people have struggled with). However I was able to get her to sleep afterward.
Then she was awake before 5. I handed her the iPad, at this point exhaustion was taking it's toll. She played for a little while then handed it back. I was, again, able to get her back to sleep. And she stayed asleep this time for a number of hours. I was able to get a little more rest before the doctor and nurses started coming in to do their morning rounds. The plan was for her to get another infusion of chemo then we could go home.
The two weeks prior to the start of this week she had been having diarrhea, gas and general discomfort. Which made for a very red bottom. I wasn't sure if it was something or if it was just a result of the meds she was on. The week of  Christmas she was on the steroid, which causes all kinds of issues. I realized two days after she was off it though that I hadn't been giving her pepcid, like I was supposed to, during that week. So that, I know, contributed to some of her problems. While we were at the hospital Monday they tested her for C Diff, as soon as the doctor suggested it I knew it was going to be positive. And I was right. After just a day or so of being on the medication for it she was doing so much better in the bowel department. Although as the week has gone on I'm afraid she might be swinging to the opposite end of the spectrum. Fortunately I've got all kinds of things to help with that.
Because of the C Diff and the steroid for a couple of weeks her sleep was, in a word, awful. Again this week her sleep has improved drastically. With all the coming and going she, and I, I think have reached new levels of exhaustion. I'm so grateful to have a few days of a break. And the reinforcements, my mom, will be coming in tonight.
Once we push through next week we have a couple of weeks of a break, just lab draws once a week.
Here's just a few snap shots from our week.

Like I said, we're exhausted!

The big kids had a day off of school on Wednesday (also Brother's birthday) due to the cold 

so they came with us for her appointment. 

It's becoming comical the number of pictures I've taken of her sleeping this week

Until a few days ago hot dogs were the flavor of the week. This is right after 

her lumbar puncture on Monday when she was finally able to eat.