Because She is THAT Good!

Manda had labs today just to check her numbers. She is not off the charts high, but she is well within the safe range. So, I only need to give her shots every-other day now and she can skip her Thursday appointment. She will have a hearing test on Wednesday (one of the chemo drugs can effect her hearing so they will check her each time before she gets that one) but does not need any bloodwork done. We will check her numbers again next Monday.
We are all set to enjoy our two-week hiatus from treatments and will prepare for our next inpatient stay mid-August which will mark the beginning of Chemo Cycle #2. Now we know what to expect and can look for trends in how she reacts to things. For instance, when her numbers dropped so low that we basically quarantined her in the house it was a bit of a delayed reaction from the first chemo drug she had been given. This time we will see that coming, so she will probably get more consistent shots to keep her numbers from dropping so low.
Good Day!

Mere :O)
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Rounding Out the Week

Manda's numbers are up! Yay!
But I have to give her shots again. Boo!
Mere :O)
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Navigation

Once in a while you should stop and look at a map just to make sure you are still going in the right direction.  That is sort of what we did this week.  There was a momentary panic when we thought we may be heading off course, but, we have found ourselves firmly on track and going full speed ahead towards our destination.

There was a lab error with the AFP.  We believe the number at diagnosis while still high was diluted, maybe twice, to give us the almost 2500.  The real numbers we are looking at now are well above 330,000.  The concern came when we did not know if it was in fact a lab error or if the tumor had grown or spread or just did not react to the chemo we have been throwing at it.  The CT scan we did today gave us our answer.

The nodules in the lungs are clearing up and the tumor on her liver has shrunk to 2/3 its original size.  The Oncologist came to me with tears in her eyes and hugged me she was so happy.  I took this to mean that I had not been as worried about this as I maybe should have been and also found it quite comforting that we are working with someone who is incredibly knowledgeable and competent to treat this disease. Moreover, she is doing so without checking her emotions at the door.  She actually CARES about Amanda, not just her tumor.

So, after spending all day at the hospital I got to work late and stayed late and must be in first thing in the morning so, I have said it before and will say it again.  So far, so good!  (Manda summed it up by repeating Zoe from Sesame Street's "Happy Dance" song which is Zoe jumping around and around saying, "Happy, happy, happy, happy, happy, happy, happy" all over the place.  We are indeed happy.
 

Mere :0)

 

www.mandameow.blogspot.com

Good and Bad and Hmm.

Amanda had labs an exam and chemo today. The nurse mentioned she had to pull an extra vial of blood for a test they added on last minute. I asked if they were checking the AFP which is a "Marker" that shows up in the bloodstream with this type of cancer. She said they were. (Yay!)In theory if the tumor is shrinking as a result of the chemo then the number will be lower than it was when she was diagnosed. If the number does not go down then they might adjust their plan and use some different chemo drugs.
They also gave us a tentative schedule for the next cycle of chemo. This schedule of course has her doing inpatient chemo the weekend we were supposed to go to the NASCAR race at Michigan in August but we do what we've got to do, right? It also showed doing another CT scan that week and another one in mid-September. The one in September would tell us when we could expect surgery.
Her ANC was down again to 811. This is higher than the "Extreme Danger" zone which put us into quarantine but it is still below 1000 which means we are in the regular-ol' danger zone and need to be cautious about what she comes into contact with.
THEN we found out that her AFP came back astronomically higher than when she was diagnosed. The Dr. thinks this shows a lab error, but which number do we believe? Hmm. So, they will redo this test tomorrow and they rushed to schedule us for a CT scan on Wednesday morning so the Doc can see for herself what changes have been made, if any, to the tumor using the current chemo protocol. We are once again following their lead.
Manda is now sleeping after only a 20 minute nap in the car this afternoon. Hoping we all get a good night sleep.
Mere :O)
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Non-Q

I do not even know where to begin. Manda was so tired and pale last night. She did not sleep well (so neither did we) and I knew today was a chemo day I just fought the feeling all morning that she would be admitted today and we would end up spending the next week inpatient.
Instead, my girl kicked some serious butt and her counts are up well into the thousands now. She is healthy and able to fight off infections. No more quarantine!
We have a haircut scheduled for Sunday. Her hair is now falling out at a high rate of speed. She keeps saying, "Uh-oh!" and handing us strands of hair. Here we go...!
Mere :O)
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Q2

Well, the ANC number that we were hoping would go up over the weekend actually went down more. We went from 375 down to 150. So, we are still in quarantine. I hate to limit her visitors as she is such a social butterfly but we do not have any options at this point. No one wants to be the cause for her getting sick, so it really hasn't been a problem, more of an inconvenience. I do feel badly that Grandpa and Grandma-Kitty are here from New Mexico and now feel they should not visit. The nurse did tell us to change her medication schedule today and we'll see how she is doing on Thursday when we go back for more chemo. If her numbers go back up then she'll be safe again. That is the weird thing, she is not actually sick, we just need to prevent her from getting sick. We both wished we had a bubble to put her in after coming home from the NICU. As much as I wanted her to be safe, I knew we could seriously damage her psychologically by over-protecting her. We had come so far! Now we are right back where we started. I can only hope that she gets through this at an early enough age to forget the majority of what has been done to her.
On a good note, she has taken to holding up books and saying, "Read!?" It warms this bookworm's heart. She has been listening to audiobooks in the car with me. At the moment we are listening (again) to Harry Potter and The Order of the Phoenix. The Chamber of Secrets played over and over ...and over during my trips to the NICU. I find escaping to Hogworts to be very soothing.
Hoping for better news on Thursday.

Mere :O)
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Quarantine

Manda had chemo today. Luckily, it was an IV Push which means they put a syringe of meds through her port access and the whole thing was finished in about ten minutes. Of course that came at the end of our afternoon at the Day Clinic. We got there for her 11:30 appointment and they checked her vitals and drew blood and then we had to wait for the numbers to come back before they could give her the chemo.
Today's numbers were not as good as Monday's. The main one we are looking at is called the ANC, the bigger the number the better chance she has of resisting or fighting off infections. We want this number over 1,000. On Monday her ANC was 11,170!! They told me to hold off on her shots for a couple of days and we would see how she did. Today her ANC was 375. WOW. Big drop. She is below their minimum of 500. This means she cannot go out in public places, needs to avoid other kids and visitors who may have been exposed to anything recently or have a sniffle or a bit of stomach upset. We all must wash our hands until the skin peels off (I already accomplished this with a nice chemical burn where the Purell pooled up under my wedding ring). Any sign of fever or illness could mean they would re-hospitalize her.
SO, we will be hanging out in the house this weekend enjoying all of the lovely new books and toys she has been given in the last week by her biggest fans. Seriously, we have the best friends and family ever. We even got a package from her daycare which we had to cancel due to the risk of infection, and today we received a card from the nurses who took care of her that week we were there. How sweet is that? Nanny Rachel joins us again tomorrow (YAY!) to keep her home and healthy while giving Grammy a well-deserved break.
She is not sick, we just want to keep her healthy. Again...so far, so good

For the Record

In case you were wondering, the first time you see someone you know after learning that their child has cancer, it would be helpful for you NOT to share that your relative/neighbor/friend died of cancer when you were (insert age under 10). I know you are trying to show that you can relate. You cannot. The only way this information could be helpful would be if I were to say, "She is having a hard time with the chemo side effects in (insert particular issue)" and then you would say, "Oh, my relative/neighbor/friend found it helpful to do (insert suggestion which actually HELPED)."
Thank you.

Sleep Counts

We made our first trip to the Day Clinic yesterday for "Labs". This means they access Amanda’s port, draw blood and then we sit around for 2-3 hours waiting for the results with all the other families who are doing the same thing. It was well worth the wait as they said she was doing beautifully. The nurse called her an over-achiever! Her counts (red and white blood cells, hemoglobin, etc.) were so good they said we could back off on the Neupogen shots (YAY!), so we get to skip those Wednesday and Thursday and we will see how she is doing then. We go back on Thursday for an outpatient dose of chemo. Then we do not have to go back for a whole week until the next Thursday for another dose of chemo. Hopefully she will continue her non-nauseous streak. Her appetite has been low but we let her eat what she wants when she wants and that seems just fine. It can be a challenge figuring out what she wants sometimes, we have fixed things per her request only to have them turned away once ready. However, I would rather have her turn it away than clean up a mess if I force her to eat it. They also gave us a stool softener to help her move things a bit more easily in the future.

I can tell she is feeling better physically as I saw her sleeping on her stomach this morning. This is a HUGE step. She has always been a tummy sleeper, since the very first few days in the NICU. They would have to turn her every 4 hours to avoid bedsores and to prevent flat spots on her head. She always did better (oxygen sats, heart rate, and breathing) when on her belly. She continues to sleep this way now, only between her biopsy (middle right abdomen) and the insertion of her port (upper left chest) she has been too sore to sleep that way. I think this caused some of her agitation in the hospital last week. She feels most comfortable on her belly, but could not lay that way. Now that she can, I feel better too. We took her to the hospital and she felt fine, the next day was the biopsy and she has been recovering from that ever since, feeling sore and then sick from the chemo. Poor thing. I am glad she if finally getting to feel like herself again.

To Call or Not to Call

This has been the question weighing on my mind overnight. The Day Clinic is open 9-5 Monday through Friday. Over the weekend we can call and have the Pediatric-Oncologist/Hematologist-On-Call paged for emergencies. They stressed two things before we went home on Thursday night. If you are debating about whether to call or not, call. However, they also said, only page the On Call doctors for true emergencies. So, was my question a "true emergency"? Hmm.
The background is this. What got us to the doctor in the first place was Manda struggling with diarrhea and horrible diaper rash. The rash has cleared up thanks to some FABULOUS stuff they provided at the hospital. 49% petroleum and 15% zinc. Worked miracles! Anyway, the diarrhea continued throughout her hospital stay and they believed that as the chemo kicked in and started working on the tumor she would even out and the problem would go away. Some of the drugs she is getting actually have a constipating effect so things could all balance out. They did stress however that she MUST have at least ONE dirty diaper every day. She has been averaging four per day so this did not concern me, until yesterday. She did not have a dirty diaper yesterday. I remembered the oncologist saying we could get her a stool softener to help her out if this became an issue, but that leads to the original question. Is this an emergency for which I should page the doctor on call? Do I interrupt the guy's holiday weekend to ask about poop? It just didn't seem right.
Luckily, things worked themselves out on their own, uh, so to speak. She had a dirty diaper today which seemed quite uncomfortable to produce. It did however take the pressure off of me (and her too I am sure). We will be in the Clinic tomorrow morning and I can ask then about the stool softener for the next time and I do not have to call with the poop emergency question. Had she waited any longer in the day I would have called, but now I think we can wait.
Now if only we can get her to eat some more solid foods, that might help too. She drinks her milk just fine but hasn't wanted her juice or water. She picks at her food and has little bits at a time. They said this could be a sign of nausea or even her tastes changing due to the chemo. They said not to force her to eat, but let her eat what she wants when she wants it. Nothing more fun than putting the 2-year-old in charge!

"Bye-Bye, Home"

We left the hospital last night after Amanda's dinner had settled, her transfusion was complete and she had one more dose of anti-nausea meds to tide her over. We kept telling her we were going bye-bye and we were headed home after our week long stay. Today in the driveway she looked at the Envoy, went up to it, patted the door with her hand and said, "Bye-Bye, Home!". I guess she remembers more than we giver her credit for.
She is tired and still a bit shaky. Her confidence is low. She was sticking to me pretty close today. She asked for "Elmo on?" over and over. I had to explain that while we were in the hospital and had to lay quietly most of the time she could watch all the Elmo she wanted, but now that we were home with different toys and books and better things to do we are not going to watch Elmo from sun up to sun down. She broke down in tears. Really cried. I think she was letting out more than just the loss of her continuous loop of Elmo. Poor thing has been through a lot in the last week and really doesn't understand what is happening or why.
So, according to the schedule the discharge nurse provided she has only outpatient things scheduled for the next three weeks! We go in for labs on Monday morning, then Thursday and again next week Thursday she will have outpatient chemo at the Day Clinic. The following week she has chemo every day but all at the Day Clinic so we can all sleep in our own beds at night. Yay!
Tomorrow will be my biggest challenge yet. I have to give her an injection of medication to help keep her white blood cells up (and therefore her immune system). I was able to practice once on a nurse at the hospital but that is SO different from a toddler who will cry and hold a grudge, even a short one.
I am exhausted. The days at the hospital were long but we kept busy enough with doctors coming and going and meal trays and naps (hers) and reading all the new information they gave me and really no expectations. Here at home we have to clean and take the dog out and keep Manda occupied with things other than the TV. I am worn out! Thank goodness it is a long weekend. Happy Fourth of July!

It's Only Just Begun

Amanda had her first chemotherapy treatment last night. The drug name is Cisplatin. It was given through an IV drip over the course of several hours. She never knew it was happening and we both got the best night's sleep we have had since being here. Today was a day of rest and rehydration. We watched her all day for signs of nausea and she seemed not to have any though she ate light all day. The only problem came with her evening dose of iron which she is getting to treat her anemia. The stuff is foul. I will not deny that and we actually discussed adding a flavor to it with the pharmacist tonight to make it easier for her to take. This did not happen before her dose for tonight was measured out however so when she got it she fought it and gagged and that was the only time she threw up all day. Poor thing. We got her cleaned up and gave her ice chips and water and she settled down with Meow to watch Elmo...again. I cannot tell you how many times we have watched the same four Elmo videos since we arrived on Thursday. Her two favorites are "Up and Down" and "Elmo Potty" which are not the actual titles of the DVDs but rather what SHE calls them. The music is catchy and I find myself humming along to the songs long after the TV has been turned off for the night.
She is obviously feeling better from the biopsy and port placement on Friday. She has been sore and not wanting to sit up for long periods but today she was actually asking to stand up. She asked because she is still quite wobbly on her feet and wanted support. When she was tired she would ask to lie down again.
I told the doctor today that I feel like I can handle the hospital a bit easier than parents of other newly diagnosed kids because I did go through the NICU experience. The difficult thing now is, we have to keep her entertained! Last time we could sit by her isollette and put a hand on her and just watch her breathe and sleep. This time we are blowing bubbles, reading books, swapping out toys when they get too boring, keeping Elmo on from sun up to sun down and responding to her every request. Whew! That will wear you out. Then, when she does sleep I try to read up on the materials the hospital has given me to learn about her condition and how to care for her during chemotherapy. It is going to be a L-O-N-G six months.
Anyway, tomorrow is another dose of chemo only she will get Vincristine and 5-FU. Then, if all goes well, they may send us home! Otherwise, probably Friday. We'll just have to wait and see what tomorrow brings.

Here We Go Again

Just to make sure we didn't start taking our beautiful thriving daughter for granted, Karma came up from behind and smacked us on the back of the head. After being born at 24 weeks and getting through 105 days in the NICU, Amanda went on to develop quite normally. She suffered a slight speech delay and some fine and gross motor skills have been helped along with occupational therapy, but for the most part people think she is an average charming active and inquisitive two-year-old. Now she is all of those things with a tumor in her liver called hepatoblastoma which has metastasized in the lungs just a bit.
This is the beginning of our journey to health. We will get her there. It will not be quick. It will not be pleasant all of the time. It will not go down as one of my favorite experiences in life. But we will enjoy each moment we share on this journey and love each other as if all of our lives depend on it, because they do.