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We had the week off, sort of. We were discharged from the hospital and were able to go the my aunt’s house to celebrate Easter like we do every year and Penelope had a good time but she was really tired. Her counts were good but her hemoglobin was low so even though she tried to play as much as she could she was exhausted. Upon discharge the doctor said that she should last until her next appointment on Tuesday and would have to be transfused then but I needed to keep a close eye on her. Well Monday she wasn’t feeling 100% but I was trying to lift her spirits just a little and we all know what makes a girl happy…The Build a Bear Workshop. I only planned on taking her there and bringing her home but she insisted that we stop by the Disney Store and so we did. We were wandering around and she didn’t really want anything, which is incredibly unusual for her, but she decided on a Mickey Mouse reusable cup. I went to find the pink one I had seen as we were walking through the store to ask if she wanted that one instead and left her playing with the carousel of little nick knack toys and came back and she was asleep on the floor! Another mom who was right there said she had just took her crutches off, laid down and closed her eyes. I was literally 4 feet from her and she didn’t say anything to me. I was freaking out at this point thinking that her hemoglobin dropped considerably. I grab our stuff and rushed out.

I called the hospital on the way in and told them what had happened and they said they would get everything ready, pre-meds, blood, a bed. What they do on her is called a type and hold. This means that they keep blood in her type on hold for her so I can’t encourage people enough to just give blood at your local blood bank. A lot of people always ask if they can give blood specifically for her but it’s actually kind of a long process to process the blood so it may not even make it to her specifically in her immediate time of need but if you try to give blood often regardless then the supply in our county will stay high and we won’t have to fly to other states to get it. That’s my public service announcement for the day When we got there they just swooped in and took us back. The transplant nurse came and changed her caps and reinjected the heparin into one of her lines using a dead cap at the end to preserve it for steam cell collection this week and they were able to use the other line for the medication and blood. We ended up in the clinic for almost 7 hours and she got a lot of blood. The premeditation they give her is precautionary if she were to have an allergic reaction. She gets Tylenol and Benadryl.

Tuesday she was a little bit grumpy and slept but when she was up she seemed to feel much better. Wednesday and Thursday she was fine and went to Tia and Marley’s house while mom was at work. Krystonia told me that she kept saying she didn’t feel well on Thursday so again, I had to leave work early to go get her but took her home and we snuggled and she fell right to sleep. After she slept for a few hours we woke up and made spaghetti, she loves to cook.  So that leads us to today, Friday, we go in for labs today and her history and physical for potential admission on Sunday night to collect the stem cells. Basically what it is is a different kind of bone marrow transplant that they are preparing her for where the use her own stem cells in her blood to save and transplant after she’s done with chemo and possibly radiation, I’m not sure on that.

We go in again on Sunday to do counts again and if she is ready then the plan is to be admitted Sunday night for collection on Monday morning at 7am. What they do is hook her up to a large machine, what I was told is the size of a refrigerator, in her room and she stays in bed while it filters the stem cells out of her blood and puts the blood back into her body. It obviously will take hours because her body is little and they can’t move too fast because her body needs to make more blood with stem cells. I haven’t been told the expected time frame for that. From there she is scheduled to go in for round three of chemo on Monday the 23rd. Now if on Sunday her counts aren’t good for collection then we come back daily to check them again for admission that night. I was told that they don’t really look at her ANC on this procedure, they look at some other markers to determine if she’s ready and when I find out what that is I will let you know.

Now I was told that the next rounds of chemo are going to be high dose, which I already thought we were getting but apparently she has been getting a higher dose than she had gotten previously and the one chemo she had  never had before. When they say she is going to get high dose it means the maximum amount of chemo they can use for her body. That’s more than a little scary. I am anticipating things are going to get much worse than they have been and this chemo will completely wipe her bone marrow out, hence the stem cell collection. I still only know that far into the game and hope that more will become available after the collection this week and how she responds to the next round of chemo. I haven’t been told either what the plan is for her follow up scans. I was under the impression that she was getting them after the last round but maybe because her counts dropped so low and she pushed us back a week they will hold off until the next round or possibly when we are inpatient for this round.

So, I prepare us for admission again this weekend. It’s a lot of packing and unpacking! Not to mention moving into a friends place while he is away on work so we can be closer to the hospital! We have totally taken over his house with girl stuff and bags of hospital stuff. I am going to try to organize that this weekend too…wish me luck!!

This week has been a hectic one for sure. Penelope’s birthday was on Friday and we had a little party in her room. We were able to get out on Penelope’s birthday, Friday night at 6:30p, for the weekend because we had to be back for admission on Monday at 9a. When Penelope heard the doctor say that we were able to go home she told Aaron that she didn’t want to go home and that he could go. We tried to figure out why she didn’t want to go home but we deducted that she didn’t want to miss her party…sweet girl. Even though it was short it was a nice break. She had a good time at home playing with all of her toys and we went to Walmart on day and Target the other. She got to look at the Easter good at both stores and decide what she would ask the Easter bunny to put in her basket for her and I spent most of the other time we were at home cleaning and organizing.

Monday admission started off with a bang because her lines would flush okay but there was no blood return so the couldn’t draw back and get her labs, delay number one. What generally happens is that the blood does what it supposed to do in our body, although it’s not beneficial at this point, and it forms a fibrin sheath which basically acts like a one way valve. When this happens they injected TPA into the lines and leave it in for at least an hour and then draw it out and try again.  While we waited we went to McDonald’s and had lunch then of course Penelope was walking back with me and slipped because they were mopping the floor. She got a sweet little bump on her noggin and  McDonald’s gave us 10 free meals, 5 happy meals and 5 extra value meals, to say sorry. Luckily the TPA worked but we still had to wait for her urine to pass. It has to be at a certain specific gravity indicating she is hydrated enough so mom kicked into high gear and I was motivating her with candy if she drank all of her Gatorade and juice boxes.

Chemo is 5 days with three medications days one and two, then two drugs day three through five. The first days it is etoposide, carboplatin, and ifosfamide.  Days three through five it’s only etoposide and ifosfamide, the whole time she gets mesna for protection of her bladder. It’s nice to have the chemo run in the evening and night because she isn’t allowed to leave the room when the main three are running so we have most of the day to go to the playroom and walk the halls of the hospital but the downside is that we usually don’t get out until day seven then and that means we leave on Easter. The mesna runs 24 hours or so after chemo ends and her last bag was hung at 9p last night.  Penelope was very concerned that the Easter bunny wouldn’t know where to leave her basket but we assured her that the Easter bunny knows.

During our stay this round Penelope’s bestie Marley had a scare and came in to the ER by ambulance because she passed out at home! It was a very panicky Monday and she ended up getting admitted so we had some days when we would go wander the halls all together. Other than Marley, this week was fairly unremarkable from a chemo perspective. I didn’t go to work on Monday because of admission and then missed Wednesday because she didn’t feel well. She literally asked me on Tuesday night if I stay when she is asleep and I told her yes then she asked if she stayed asleep all day on Wednesday if I would stay with her and I said yes.

Coloring eggs in the hospital

So we have today left and get to leave tomorrow morning. From here we are going straight to my families Easter celebration at my Aunt Carol Ann’s house. It’s always the best time. She really does a number with the egg hunt and dinner, it’s really awesome. Hopefully Penelope will find the golden egg again this year, except since we got it last year maybe we should let one of the other kids this time lol.

The plan from here is a little crazy. We are discharged Sunday and since stem cell collection is the next step we have  crazy busy week. She starts getting GCSF shots tonight then we come in on Tuesday 04/10/12 to check her labs then they do a dead end cap change and high dose heparin lock. Repeat that on Friday 04/13/12 including a doctors exam for a history and physical. Sunday 04/15/12 we come in and check labs again and continue our day then if her labs show she’s ready we double her GCSF and get admitted late Sunday night and start collection through her apherisis line very early Monday morning. If she isn’t ready then we repeat it Monday for collection Tuesday and if not Monday we continue everyday until she is.

I still have a ton of questions about our plan from here and honestly a lot of it is in the air until rescan, which I think is after the collection. I will update everyone on the plan as soon as I know. I want to thank everyone who has been supporting us near and far. We have a large group of strangers, some of who have become amazing friends, offering words of encouragement and financial assistance to offset the time I have been missing at work, since I am a temp technically I don’t have any vacation or sick leave at all. This groups stretches very far, like Lori Hanson Krause, Sadie Reichelderfer, The Blanket Fairy and the lovely ladies of Butterfly Kisses Care Baskets. A large group of friends I have seen in YEARS and that were just acquaintances then have really surfaced too which is such a blessing since having a terminally (potentially) sick child causes some friends to sadly disappear, something I definitely don’t understand at all. It is hard to think about. The there are the family and friends who remain a constant in our lives and visit every admission regardless of it being scheduled or not. Thank you all, it means the world.

It is the eve of the birthday of the most precious little lady in my whole life. Tomorrow this little amazing person will be three. Two out of her three birthdays have been spent in the hospital. Her Tia, Marley’s mom, asked her today what she wanted for her birthday and she said she wanted to “go where Mickey Mouse clubhouse is”, I’m guessing she means Disneyland, but that she couldn’t go because she had no hair. When Tia, Krystonia, told her that she could totally still go she got very mad and said “It’s gonna grow back Tia”.  It sounds really heartbreaking but she also reminded me of something tonight.

As we lay down for bed and say our prayers, for the first time EVER, she asked me if she was going to die. We say your standard “Now I lay me down to sleep” prayer and I know she didn’t understand the gravity of her question but it is a very fair and valid question.  It was quickly followed up with “to take MY soul?”. We changed that bedtime prayer tonight. In my 34 years of life I only know that one prayer to say before bed…and it’s a new one now.

We changed it to “Now I lay me down to sleep. Jesus bless me with what you have for me. Thank you for today and for all of the tomorrows ahead. Hold me tight and keep me safe. Amen”. She’s so sweet because after the prayer we bless everyone in our lives that she thinks of, standard is all of our family (California, Texas and Oklahoma), the dogs (or rather every dog she has ever met because she is a big, BIG dog lover), Marley and her family, Sky and her family (which takes a long time to say guys…a little help), and God Bless Jodi (her Physical Therapist <3).

My sweet angel, I never wanted anything more in my entire life but you. I always said that when I grew up I wanted to be a mom and well…God was listening and he is putting my “mom” to the test. I have some very special people that I was lucky enough to have in my life at one point or another who helped me learn who I was and become the person I am today. One mom showed me how challenges come and you just keep going and keep loving and never lose hope. She is an amazing woman and friend to me and I will always try my hardest to honor her knowledge by loving you with everything I am. I am so sorry you have to endure all of this, if I could take it from you I would take it in a second. I would fight and fight to make sure I was here with you always but since it’s not mine internally but yours I need you to fight and fight and fight harder for me. I need you. I can retrace all of my steps in life and in pregnancy to figure out what happened, if I did something, if there is something I could change to take it back from your little body but I refuse to grieve and I won’t let anyone else either. You’re here. WE’RE STRONG! WE WILL WIN. You’re mine forever and this WILL NOT BEAT US. I love you more than anything in the world. You are my sweet angel, my ladybug, my midget…my everything. Happy Birthday my love…you are a blessing to so many and are flooded with love, prayers, thought of comfort and good vibes. In everything you do, even at your age, you excel and impress. Keep it up and we’ll be just fine.

I love you.

If you want a cool shirt like Penelope’s go to DWBHShirts.org and buy one (or another one if you want something else) in her name! She is a warrior on their page and they are assisting in some of our expenses. I am also working on a paypal button but haven’t quite figured it out. So all of you who have been asking me, I’m still figuring it out but hopefully it will be up this weekend. Thank you all for your love and support.

I am happy to say that Penelope has reached the threshold…her counts started climbing and got high enough to stop her neupogen/GCSF! She was 5k yesterday! The weekend was pretty mellow and now that her counts are up we are one step closer to moving forward. She went into the capable hands of her surgeon this morning to have her line switched from a hickman line, as she has always had, to a pherisis line for stem cell collection and for the remaining chemo treatments. She did really well. She took a little while to wake up and getting back into the swing of her day and she was really tired. We’ve all been running a little thin and Aaron and I have both been battling being sick too. I have battled double ear infections and now Aaron most likely has the flu so we are constantly playing the “who feels worse” game to decide who is less infectious.

So the difference between the hickman and her pherisis line are the size of the lumen. The new line is more specifically used for the stem cell collection but can be used for chemo as well so she will be keeping it. The stem cell collection happens 5-7 days after round two of chemo ends which is hypothetically when her counts would be rebounding. It is a process similar to dialysis in which they pull her blood out through one line, pump it into a machine that spins it in a centrifuge to extract the stem cells and then replaces the remaining blood product minus the stem cells back into her through the other lumen. She is a tiny person, my midget, so it takes a while to do it. They can’t go too fast.

You can see in the picture that I took tonight the size difference in the lumen from her previous line. They are more like small hoses. From what I can tell they look a little more secure and the lines are much more rigid which seems like somewhat of a positive to me but there are also risks. The lumen, or space inside of the tube, is larger so there is a higher incident of infection since there is more room for bacteria to grow. This is concerning because as most of you know our little lady is a line infection magnet. I have done my best to ask every doctor that is involved in her infection care and control what additional steps I can take to alleviate these but they say that there isn’t much more to do beyond what I am doing minus putting her in a bubble. They’ve assured me that I have done everything right and as long as I continue to do that then I am on the right track.

My poor midget starting losing her hair very quickly. Once it started falling out it just came out by the handfuls. I guess I forgot about that part and how crazy it gets but the three times before when she lost her hair it was so much shorter than it was this time. We did cut it into a cute bob but the hair on top was still so long that I was having a hard time keeping it under control as it fell out. I would wake up to her crying because she was coughing up a hairball and then would try to wipe the hair out of her mouth and since she sleeps with her hands behind her head 85% of the time she usually just wiped MORE hair into her mouth and it just got hairy, pun intended. The hair loss always gets to a point where you ponder whether it’s time to just cut it off or let it continue to fall out on it’s own.

I do think that it looks better, when you get to a certain point, to just cut it. It’s really hard to understand how some parts seem to hold on so hard and others just jump at the opportunity to bail. Even now that I look at it it seems funny that there are still clumps that are sticking around and even still growing! I’m sure after the next round things will be different and there won’t be as many holding strong but as of now, it is here and there and we will continue to clip here and there.

We have made ourselves comfortable here because I think we’ve all resolved ourselves to the fact that Penelope and Marley are now fighting for first place in the how many consecutive days we can stay inpatient. There doesn’t seem to be an end in sight for us right now but we are just going with what he have to. It’s hard because Penelope is questioning a lot of things, like where her hair “goed” and why she can’t “just go home to crampa”. She has a follow up CT for this lung infection that they think she has and then from there we decide when we can start round two of chemo. I say think only because they are treating her as though she does have it because to really know they have to biopsy it and that would just be too invasive at this point. She was supposed to start today so there is a sense of urgency with it all. Depending on when she starts the stem cell collection will follow closely behind and although they haven’t said anything I have a feeling we won’t be leaving for the time between chemo and collection.

So this Friday is Penelope’s 3rd birthday and although she and I discussed going to where Mickey Mouse lives for her birthday we will be having a birthday party here at the hospital. It is on a Friday so we will probably be really low key and she literally gets gifts from people everyday here, which is good and bad, so I am not completely sure how she will differentiate it but we’re going to figure it out. I am going to try to go through what she has here to move some stuff out before we start getting things coming in again.

My brave little warrior is doing such a good job and I can’t even begin to thank everyone who has been coming by, making dinner, involved in her care, involved in OUR care, spreading the word, reading her updates, thinking about childhood cancer, supporting our family, loving her and praying for her.  I will be posting some new fundraising efforts through a couple of different avenues in the next few days. I know so many have helped us in the past and I do so deeply appreciate it. With her care being as in depth as is this time around I am teetering about work. Aaron and I are struggling with what course of action to take in all of this. We have a LOT more loose ends this round than we previously had.

I did get a new camera for Christmas so our pictures will be getting better than camera phone pics, not this time but we’ll get there I am trying to keep track of her beads of courage, pay a crap load of money for her medical records now so we don’t get in over our heads with it, make sure to update this often so people can see our little monkey in her journey and continue to keep her in your thoughts and prayers.

Stay tuned for my next few posts with new  information on her immediate future and for pictures of her birthday! Please spread the word to anyone you know that previously followed Penelope on here and let them know we were able to get the site up again and are updating here again. I know a lot of people aren’t checking anymore but if you can help let them know that would be great! Thank you!

For a recap of the past two years and to learn how we got to this post, read here.

After 8 long days of zero ANC we are on the upswing. Yesterday Penelope’s counts went up to 290 from 44 the day before and today we are rockin’ a solid 672! Go baby! We are still going to be in here for a while though. So here is the plan.

Penelope is going to be on high dose chemotherapy called ICE. It is Ifosfamide, Carboplatin and Etoposide.The Ifosfamide causes irritation in the bladder which can lead to bleeding so it is administered with Mesna which protects the bladder. It is chemo that is a 5 hour infusion time everyday over five days with 24 hours of hydration afterward. They scheduled 2 rounds of chemo, she has to have her hickman line replaced with a pherisis line so that after her second round of chemo she will have stem cells collected. This includes something like a dialysis machine that removes her blood, spins it in a centrifuge to separate the blood and allow the extraction of the stem cells and then it pumps the rest back into her body. It take a long time, like 10 hours I have been told, because her body is so small they can’t go fast or she’ll get sick. After the collection we are supposed to have scans again and make the plans for steps going forward from there. It is a lot of “what if” this time around.

We finished round one of chemo on Wednesday March 7th. She was in good spirits and seemed tired but her counts were ok and she acted tired but normal. We had a mellow weekend visiting with Grandma and Grandpa and I had one day to recuperate from double ear infections and then Sunday she put herself to bed and slept really deeply that night. Monday morning I went to work for a few hours and then around 9:15a her dad called me and said she had 102.5 degree fever. Now anyone who has followed Penelope from before you would know that she goes from 0 to 60 in 4 seconds flat so I was just going to meet them at the hospital. Aaron’s car wouldn’t start and I ended up having to drive out and pick them both up. We go to the hospital and her counts we zero. They swooped in a didn’t super nurse stuff to collect labs and administer antibiotics. She ended up having blood transfused, which she had a terrible reaction to so they ended up pre-medicating her againto start over because her counts were that low. She ended up with a line infection, 2 blood transfusions and 2 platelet transfusions that day. We were admitted that night and in the last 15 days she has had 3 more blood transfusions, 3 more platelet transfusions, fungal pneumonia, 3 CT scans, 2 xrays, fevers, up to 107) up until 48 hours ago. Her ANC was zero until 3 days ago.

I am going to gather up all my information and go into further detail when I get it all in order. I will know more tomorrow and where we are going from here and I will keep you updated!