As some of you know we are back in New York. We came with the hopes of having already started the protocol by now but alas, why would things ever go as planned.

We have been here for two weeks now and so much has happened! Penelope had her scans and tests and everything looked promising. Her liver enzymes had been a little high so they had us come in and check it daily and it was going up and down. It had been up, really high, about a month before we left because our whole house got the norovirus and it was a doozy. By house I mean everyone…Penelope, Mom, Dad, Uncle Jason, Aunt Jonaira, Aunt Jovanna, Grandpa, Grandma…we just shared it all around the super bowl/birthday party for me. When they told me here that it was elevated I was not terribly concerned because they said it was in the hundreds and her counts before were 723 and 1015. The liver elevation still caused us to not be able to sign consents for the protocol she will be put on for a few weeks, so we are staying for a little bit.

The new protocol is Humanized 3f8 plus GM-CSF phase 1 study. Because her liver enzymes were high she was taken off of all medications, given one dose of low dose chemo and we are just waiting. We could have gone home and done the one round at home but that would have required her to have to have all of the tests and scans done again upon our return and that is just too much in such a short period. On day one of chemo she had a very low fever so they “swabbed” her and she tested positive for para-influenza…yay for the flu. We both got terribly ill, she got better way quicker than I did but she has still had to sit around with me because I am still sick…it’s awful so forgive me if I sound like I am rambling. She did 3 days of Irinotecan and 4 days of Temodar and the thought now is that her liver functions was probably out of whack because she was getting sick. She finished chemo on Saturday and she can’t start the protocol until 2 weeks post chemo so for the next two weeks we get to go in twice a weeks for doctor’s checks, do labs and keep an eye on her while we both recover. I have quarantined us to the room 80% of the time to keep these germy little rascals away, which is hard because we have the most basic of cable and since I didn’t anticipate being here as long as we have to be I didn’t bring my laptop so we have been watching netflix on my 7.5″ kindle until the battery dies lol talk about bonding.

So two weeks from tomorrow, Wednesday, the plan is to have all of her blood work come back amazing and sign the consents. She will have an injection port placed so she can get the GM-CSF shots administered Wednesday – Sunday then start the Hu3f8 on Monday the 25th. Hu3f8 goes Monday, Wednesday, Friday and then the two weeks following that she will have blood work done. I am so hopeful that everything runs smoothly from here and that there are no more hiccups but if there are we are prepared. I definitely didn’t pack for this long stay so there has been a ton of laundry and cycling through things but we’re doing ok

I am feeling terrible so I will post more updates in the next week but for now I will leave it at that and let everyone in on pictures from my phone…I didn’t even pack my regular camera either

Good night and thank you all for your love and prayers!

 

Her pink pellet gun

Good shot!

Figaro the cat for another Halloween in the hospital

She has an adhesive allergy people! Why do we still put that much tape on!?

Ready for the rain! RMDH NYC

Mmmm Fratellis

We voted!

I know I keep saying that I will do better at updating the site and all I can say is I am sorry. Life is just a whirlwind and I don’t feel like that is an appropriate excuse because I know you all love and pray for Penelope and for that I am sorry for not being consistent with the updates. I am going to figure out how to allow updates from my phone today if it kills me!

The last few months have just been insane. After receiving chemo back here Penelope’s platelets were low so she had to have two transfusions the week before we left and following the first transfusion her aphaeresis line broke INSIDE her chest. Needless to say we ended up inpatient to remove the line but they didn’t place a new one because of the infection risk so we had to add that to the schedule for once we got to NYC. She was discharged on Sunday so we could travel on Monday and head back to New York for a month. We arrived the 27^th of August for her first appointment the following day. Week one, August 27^th through the 31^st actually went as follows:

Monday 08/27/12: Travel

Tuesday 08/28/12: Temp line placement, workup and appointment with Dr. Kushner

Wednesday 08/29/12: MIBG injection, CT, Bone marrow aspiration (front and back) and biopsy

Thursday 08/30/12: MIBG scan, MRI of brain under anesthesia

Friday 08/31/12: Evaluation appointment

After week one we tried to get a little more settled into our room at the Ronald

McDonald House and took a couple of walks. On Saturday Penelope wanted to go to Bubba Gump in Time Square but we had a late start because I had to get a BUNCH of work done. Halfway through the day the midget started acting a little strange so I tried to distract her to stay close to home. Low and behold she got a fever…and at 10:30pm we ended up in the Urgent Care at MSK. That was an interesting change from Rady’s. Since it is specifically a cancer center you call the pediatrician on call, let them know the run down and they tell you to come in or not. Then when you get in they have a bed or room waiting for you in the urgent care area and once a room is available upstairs inpatient you are moved. We stayed in the room at Urgent Care until about three in the

morning and then got transferred upstairs. We were due to be admitted on Sunday night anyway because Monday was Labor Day, the clinic was closed, and they didn’t want us to get behind schedule. Being admitted Sunday night would allow her to still start her chemo on Monday. It just added a day to our schedule but it was definitely more difficult not having someone there to bring me stuff I forgot or didn’t pack enough of.

It turned out that she didn’t have anything growing from cultures or anything so we stayed Saturday through Wednesday and got discharged to the clinic Wednesday for her last infusion of chemo. Week two went as follows:

Saturday 09/01/12: Fever, admitted

Sunday 09/02/12: inpatient, no more fever

Monday 09/03/12: Day one of chemo, no problems

Tuesday 09/04/12: Day two of chemo, vomiting

Wednesday 09/05/12: Day three of chemo, outpatient, vomiting

Thursday 09/06/12: NK collection from me in the donor center, four hours of playing in the playroom with volunteers for Penelope <3

Friday 09/07/12: NK infusion for Penelope

Aaron was able to come out for an extended weekend and arrived on Thursday night so he was there for the infusion on Friday so I could get some work done and allow for our weekend to be a little more flexible. Week three was the actual daily infusions for 3F8 which was fairly difficult and VERY long days for us both.

Apparently most kids who get the 3F8, with or without chemo, end up with a fever at some point during day one or two. By this time Penelope had already been neutropenic and it was just a matter of time before she would be admitted. She’s such a trooper that she held out until Wednesday night! She was really, really tired that day on the way home fell asleep in the stroller and when we got back to the room she didn’t wake up. I just periodically monitored her temperature and by 11pm we were back at Urgent Care going through the admission process. We were inpatient for 7 days that stay because not only was little one neutropenic, she had the fever every 3 hours like clockwork, a line infection, C.dif…I mean come on. She did get her last two 3F8 infusions inpatient so we stayed right on track.

The last week was relaxing. We still had doctor’s appointments but they were much shorter and about every other day. We went to the zoo with some friends, went to the Disney Store and Bubba Gump in Time Square, walked Central Park and just relaxed. On Friday September 28^th we packed our bags and left the Ronald McDonald House for La Guardia at 5:30 am on Saturday the 29^th!

Unfortunately we were only home for 7 days but it was a wonderful seven day. When we were leaving NYC I was going back and forth with whether it was worth going home for the short time or not just because of the travel with Penelope and I alone and a month’s worth or luggage and new stuff I had to scramble to pack and pay extra to take home with us ($80 in luggage fees on the way home AND 4 carry-ons…I mean 2 carry-ons and 2 “personal items” lol). Once we were home, even though our house was a disaster from packing to leave, it was totally worth coming home.

 

 

 

 

 

 

 

 

Penelope got to spend some much needed time with her daddy and I got to go to work like a grown-up and have some time off to clean, unpack, do laundry and repack. Luckily we only had to go back for a week for a workup, meaning scans and tests, to see where she was at that point. We arrived back in NYC on Tuesday, 10/09/12 with her first appointment on 10/10/12. She had tests the 10^th and 11^th and we had our consult to discuss the results on Friday the 12^th.

After all of that…the tests/scans showed no change, zero. It was definitely a blow. And now the plan is chemo…more chemo…

Ah New York. We got back on Saturday night and I tried to get us unpacked before Penelope had to be back inpatient for chemo on the following Thursday.

When we came in on Wednesday for the pre-admission appointment her hemoglobin was low but everything else was fine so the plan was to come in on Thursday draw her labs and check her hemoglobin just to see if it was a fluke so if it was in fact correct we could get her transfused before she started chemo. Thursday came and they checked her labs and of course she did need hemoglobin, which transfuses over 3 hours with an hour and a half lag before and after. She ended up starting chemo on Friday so it went for 5 days and was pretty mellow the whole time. She has a lot of pain in her back and we are trying to figure out how to help her. The back brace she has to wear is cumbersome and pushes on her lines so it’s difficult to fight with her to keep it on. She doesn’t have to wear it to bed and when she is just sitting or laying down but those seem to be times when she holds still the most and she hurts more than when she is moving. Of course clinically they aren’t concerned but it doesn’t stop her from hurting which is hard.

While we were at Sloan we had a lot going on almost every day. We had our clinical workup and initial visit with Dr. Kushner day one, MIBG injection day two, MIBG scan and Bone Marrow Aspiration and Biopsy on day three and evaluation with Dr. Kushner day four. The original plan was a CT in there too but it was decided that we didn’t need to do that. On the last day we were presented with the option of being included in this NK, natural killer cell, study which would require blood tests be done on Aaron and I both and once a match was found that parent would be the donor. I will try to elaborate more soon after I get all of this out first The plan was explained as infusion of the 3F8 for 5 days, home for 3 weeks for the first four cycles and after that it would go to 5 day infusion, 8 weeks off for 24 months. In between the first cycles we would do chemo and radiation. It wasn’t totally explained when the NK part would happen but whenever it was we would just get it done.

After we got out of the hospital here in San Diego for chemo we started the planning of the next trip to Sloan. I was under the impression that our next trip was going to be a week. I knew it would be inpatient for the first two cycles because the dose would be high and we were told that a side effect would be pain all over during the first 15 minutes of the 30 minute infusion and being a high dose they wanted to have really good control over the pain management part. I called and called because there was a lot of logistical stuff for me to take into consideration and there was NO way to plan any of it without knowing dates for sure. Dr. Kushner was able to call and speak with me personally and we discussed the plan. This is when the bomb dropped…it was a MONTH planned visit. What was I going to do for a month! I had to call everyone and get papers together and rush and rush while the level of my blood pressure went up and I was panicking.

As it is this is the plan:

Week one -

August 27th: travel from San Diego through Denver to NY, La Guardia

August 28th: workup and appointment with Dr. Kushner

August 29th: MIBG injection, CT

August 30th: MIBG scan, MRI of brain under anesthesia.

August 31st: Evaluation appointment with Dr. Kushner

Week two -

5 day, outpatient Chemotherapy. This includes daily visits to the hospital for chemotherapy infusions with 24 hour infusion of MESNA on a pump I carry

* topotecan

*cyclophosphamide

*vincristin

Week three:

3F8 infusion with NK cells.

Week three and four:

- count recovery

Our trip is scheduled August 27th to September 27th. Staying at the Ronald McDonald house (hopefully, I’m still working on that), $35 a night (hopefully paid for by MSKCC, still working on that too). The hard part will be traveling alone and the cost of transportation to and from the airport and  food there since the Ronald McDonald house doesn’t run the same as the good old San Diego one. They don’t have meals everyday, only when there are volunteers, and they assign us kitchen spaces but the closest grocery store is crazy expensive and not very close so walking or transportation, etc. I am going to try this grocery delivery service that I saw that looks like everyone does in Manhattan, but I guess it is Manhattan. It seems like an easy alternative for the two of us. I have to get a new stroller too a little more sturdy than the last one we took since it’s broken, having basket and it being a little bit bigger for my 3 year old would be helpful. So much to do and everything seems so rushed. I have to say that we do have so much love and support around us I can’t imagine what it’s like to not have it. Between family, nurses, doctors and friends both near and far the warmth of everyone is so amazing and encouraging. Thank you all.

Hi All,

I’m sure you’re all aware that little miss P has to go to New York to  Memorial Sloan Kettering Hospital to undergo anti-body therapy.  This type of antibody therapy (3F8 antibody) will help our angel teach her immune system to fight against the exact type of cancer cells that have plagued her since the day she was born, and diagnosed at 11 months old – which was two and a half years ago.

So when we were told that this was the best method of treatment, Carina and I had no doubt that it was exactly what we HAD to do.  But, how do we pay for it? Fortunately, we’ve maintained private insurance policies for Penelope, but there’s no policy that covers round trip airfare for a family of three to New York, especially on 5 days notice.

We had no idea how we were going to get to New York this coming Wednesday.  But, Penelope has a guardian angel.  His name is Jim Larson.  He is one of the best men, best people, that I’ve ever met.  He and my aunt Martha – have been the most dedicated, helpful and extremely positive people that Penelope has had the privilege of being exposed to.  If we’re in the hospital, they’re always there.  When all of our friends and family disappear – while everyone goes on with ‘normal’ life, Jim and Martha are there.  They sit with Penelope so Carina and I can go to work.  They bring a smile to her face when there’s not a whole lot of reasons for her to smile.  And now Jim has taken care of THREE round trip tickets to New York so that Penelope, her mother and myself can get to New York and do the consultation for her desperately needed treatment. I don’t know how to thank someone for a gift that large.  There really aren’t words to describe the appreciation that our family has for his generosity.  Thank you Jim, you’re an exceptional person.

Jim has helped us take care of the first part of this journey – but there is much, much more to come and Penelope needs your help.  We don’t know how we’re going to pay for lodging, ground transportation, food – standard living expenses – while in New York.  The Ronald McDonald house is the cheapest, but IF we can get a room its $35 a night.  Not too bad for New York, but we still have our normal life expenses – won’t be able to work, and still have roofs that need to stay over our heads when we get back.  This first stay is one of MANY that are to come, and we can’t rely on just Jim’s generosity to get through this.  Carina won’t be able to work – and Penelope may need to be in New York either 6-10 different times, or for up to a solid 6 month stay.  What are we going to do?  We have no idea, but we’ll do anything that we have to in order to make sure that our little princess gets the help she needs.

That includes asking for your help.  If 4 people donate $35 then it will cover our lodging while we’re in New York…for the consultation.  I truly wish that I had all the money we needed – as the Dad it’s my job to provide and protect, and it hurts my heart that I can’t provide everything she needs, but that also means asking for help, humbly, to try and get this precious little girl taken care of – that’s my job.  I wish that she wasn’t sick, and I was that I had more money – but she is and I don’t.

We understand that the economy is terrible and most of us don’t have money – those of you that do, if you are able to help, it’s greatly appreciated.  For the rest of us that don’t, if you have an idea for a fund raiser, PLEASE contact me.  If you have frequent flyer miles that you’re willing to donate, PLEASE contact me.  If anyone has any ideas on how we can fund our angel’s treatments, PLEASE contact me.

We’ve been in the hospital for a week and a half now and Penelope is still struggling to feel well enough to leave.  Her ANC is still Zero, had gone up to 36 yesterday, back down to Zero today.  Keep your fingers crossed that we can get her counts high enough to get out of Rady’s and get on the flight to New York (Thank you again Jim and Martha!) so we can move her treatment forward.

Anyone can contact myself or Carina at aaron.buttress@gmail.com, carina.buttress@gmail.com  or 619-846-1911 (Aaron) or 619-846-1919 (Carina).  All suggestions are appreciated, and donations are graciously accepted.  Have a great evening and thank you all for your support, prayers and well wishes.

-Aaron

We were discharged from the hospital last Sunday, completing a nasty round of chemo that made Penelope throw up a few times. After being discharged we were given our dates for the first trip, July 18-20. The way the schedule will work is:

Wednesday, July 18 -12 noon meeting with financial services, 12:45p meeting with Dr. Kushner

Thursday, July 19 – CT (time to be determined by radiology), 2:30p MIBG Injection

Friday, July 20 – MIBG scan and Bone Marrow Aspiration

I was able to get the information in just enough time to register with the Corporate Angel Network, which will fly us there IF there is a corporation within their network that is flying to New York from here that same time. We had to be available to fly as soon as the 15th and leave at least by the 22nd. Now this doesn’t guarantee us a spot and we could find out as late as a few days before we would have to leave so we HAVE to have a back up plan. I have a few hopeful backups but I am still ironing out those details too. I also was able to speak to the social worker there and get our name on the list for the Ronald McDonald House there, which apparently has 88 rooms with 2 twin beds per room, but it is $35/ night versus the $15/night here. So we will see how this all works out.

Now, we are back in the hospital because Penelope’s counts dropped to zero on Friday and yesterday morning she has several bowel movements that were completely diarrhea so we went in to the clinic on a sick call but everything seemed fine after several hours of hydration. I just had to make sure she wasn’t getting a fever and she wasn’t having more than two bowel movements in an hour. The doctor in the clinic did set orders for direct admission for the evening just in case she did get sick so we didn’t have to go through the ED, which is great. So…after getting home and starting dinner of course Penelope started running a fever and complaining of severe stomach pain.

We got admitted last night at 10p with a fever of 103.4 and no more bowel movements but poor thing had severe back and belly pain. As of now she is still running fevers and her cultures have been negative so far. For those of you who don’t know, they usually allow most cultures to grow out up to 48 hours to get a true idea of anything incubating because some bacteria won’t grow that quickly. That being said, we are back on the discharge instructions being her ANC being above 500, three negative cultures and no fever for 24 hours. Let’s pray for all things wonderful and that we are out in time to travel for this treatment. We really need to get back on the remission wagon quick. Luckily our medical advocate and Penelope’s Dr. Mom, Dr. Ahn, comes back from vacation on Monday. Boy do we know how to welcome her back.

I will post some pictures of the sweet girl as soon as I load them Today, I promise!

So clearly I couldn’t make a living blogging because when things in life get a little hectic the smaller things start to drop off and for that I apologize. I can’t believe how long it’s been since we updated but I also can’t believe how much has happened since then!

Since April 13, when I last posted…eeek, Penelope’s schedule went something like this:

4/15: EASTER, inpatient platelet transfusion

4/17: clinic visit, blood transfusion

4/19: platelet transfusion, admission for stem cell collection

4/20: platelet transfusion, collection day 1

4/21: platelet transfusion, collection day 2 (not enough were collected day one)

4/22: discharged

4/26: admission for chemo, platelet transfusion, chemo started

4/26 – 4/30: chemo

5/1: ER for severe back pain, admitted

5/2: discharged with several pain medications

5/3: Dr. Newton, Spinal defects surgeon visit

5/4: clinic visit, blood transfusion

5/8: clinic visit, blood and platelet transfusions

5/11: clinic visit, platelet transfusion

5/16: clinic visit for pre-admission, counts not good

5/18: clinic visit for pre-admission, counts not good, platelet transfusion

5/21: clinic visit for pre-admission

5/22: Admission for chemo, chemo started

5/22 – 5/26: chemo

5/29: clinic visit for counts

5/30: MIBG injection for scans

5/31: MRI/MIBG scans 10:30a – 7:30p

6/6: clinic visit for pre-admission, counts not good, platelet transfusion

6/11: clinic visit for pre-admission, counts not good

6/14: clinic visit for pre-admission, counts not good

6/19: clinic visit for pre-admission

6/20: Admitted for chemo!

Amidst all of this we had Aaron transitioning into a new place in Temecula, Penelope and I having to scramble and find a new place to live with little notice, me still trying to work (and actually getting hired permanently which is great), Penelope having a severe compression fracture in her back and having to be braced and medicated for it and Penelope’s treatment plan turning completely upside down. We have definitely had our challenges lately.

Without going back through and detailing every portion of the last couple of months I will give you guys a look at what is coming.

Penelope’s most recent scans show she is responding very well to the high dose treatments. The plan after scans was to do two more rounds of alternating high dose chemos then do the stem cell transplant. We were just waiting and waiting for her counts to recover and it took a really long time, much longer than expected. Dr. Ahn, Penelope’s oncologist, was going on vacation and wanted to call and update Dr. Kushner at Sloan Kettering on how well Penelope was responding since he was the main consulting party in her treatment. When she spoke with him she let him know what the plan moving forward was and he gave an alternative that would be much better for Penelope.

Her chemo for this round was changed from the high dose cytoxin/irinitecan therapy to a carboplatin/irinitecan/temador course. Two weeks after day one, today, she is scheduled to get an MRI of her head, including orbits, an echo and several urine and blood tests done to be sent to Sloan Kettering. Once her counts recover from this round we have to fly out to New York to do a consultation with Dr. Kushner and the Neuroblastoma team there, she will also get an MIBG, CT scan and Bone Marrow Aspiration done there at their facility. We will then fly back here, continue with the next round of chemo, which I haven’t gotten the run down on completely yet, and once her counts recover from that round we fly BACK to New York to have Penelope do antibody therapy there instead of doing the stem cell transplant here.

Now many of you may be asking yourself “why can’t she have the therapy here?”, I know I did. Well, for those of you who aren’t completely familiar how the protocol legalities work, every practicing group has certain criteria each patient has to meet in order to qualify for certain therapy. Children’s Oncology Group currently only treats high risk, refractory patients with this antibody therapy. Don’t quote me on that but I think I understood that correctly.  I understand that there are certain regulatory issues that get involved but in any case we have to get the treatment at Sloan Kettering Memorial in New York. Here is where it gets tricky.

Penelope’s insurance, Blue Shield of California, is privately paid for by my father-in-law, thank you Grandpa Ben, she has Medi-Cal and California Children Services. All of these are particular to California and so far no one knows how that will transfer to New York. We also have a life here, bills, rent and jobs included and paying the expenses here while paying to be there is adding a little bit of stress to the situation. They have a Ronald McDonald House which is great but requires people here to help and at the San Diego RMDH it is $15/night plus you have to pay for certain things that aren’t provided. Add in the airfare and travel costs and one of us having to make sure we are back here working to pay for everything and everything is chaos.

So day one of chemo is complete and she is hurting but the ball is rolling. I will keep you guys updated along the way and by all means, if anyone has been through this or knows of resources that help with this specifically please pass the information on to me. A lot is involved and we are trying to wrap our minds around it all but if it is the best care and what is best for Penelope then that’s what is going to happen…regardless of cost financial or otherwise. She’s worth it all.

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.

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.