Fri November 6, 2009 7:18 AM
via Twitter
Layla is in better spirits today. We’re headed to TCH to meet with her transplant team. I pray they can reassure me and ease my fears.
Fri November 6, 2009 9:39 AM
via Twitter
Dr. R said the transplant was “wickedly barbaric” but the best option 4 survival they know of to date. Not what a worried mom wants to hear!
Fri November 6, 2009 11:23 AM
via Twitter
Excited about a new waiting room.
Fri November 6, 2009 12:15 PM
via Twitter
Just toured the transplant floor. 15 beds, closed unit, very dark and quiet. Monitors everywhere. Overall pretty scary.
Sun November 8 – Bone Marrow Transplant Tomorrow – Please Pray!
Shanna – I hope you don’t mind my posting this – I figured you were super busy getting ready for tomorrow!
Hello All – this is Sarah (Shanna’s Friend) —
I’m writing to ask you all to pray for the Marsh family as they are about to go through what might possibly be the hardest thing they have had to endure so far. Layla will be going in to the hosptial tomorrow, November 9th, for a six week stay in isolation for her Bone Marrow Transplant. This is a very high risk procedure, and knowing Shanna she is rushing around trying to make sure everything is taken care of before she goes. SO I am logging on as her and asking for your prayers. Please pray that this procedure is a success and will be the beginning of the end of the Neuroblastoma journey. We can always pray and hope that Layla will be perfectly healthy after such an ordeal. Layla is such a fighter – she is fiesty and headstrong. She is a typical two year old (well a few weeks shy of that official title ) 
You would never know she was sick if you listened to her tell you all about things. She has the sweetest little voice that could make anyone just melt and instantly fall in love with her. My prayers are – this nasty disease not take any of that away from her.
So tomorrow or tonight, take a knee, close your eyes, and pray ! Pray for the every medical professional that comes in contact with the Marsh family, ask for blessings on their lives. Pray for Jenna who is 8 years old and doesn’t really understand what is going on, but she knows her baby sister is sick, and Mama is not always there. Pray for Claire who just turned 3, she has no idea what is going on, but knows who is supposed to be there to pick her up from school and doesn’t understand why they aren’t there that day. Pray for everyone who touches those girls lives – from the babysitters who stay with them and love on them, the sweet families that have already offered to cook for them, to their teachers who may just need to give them a little extra love sometimes. Please pray they will understand their parent’s commitment to their health and the health of their sisters. To have parents that pray over them and care for them like Shanna and Ryan do is such a tremendous blessing !!
Pray for Grandmas and Grandpas, Great Grandmas & Great Grandpas, Aunts, Uncles, Cousins, and all of the extended family – pray they bond together and be there for each other during this time.
And for Mama and Daddy (Shanna and Ryan), Please pray for strength and peace through this storm. They may get to see each other in passing during the next six weeks, pray they stay strong and hopeful. Pray for them as they see Layla in pain and sick everyday. Pray for them as they talk on the phone at night to each other and try to live a “normal” life – with all the “normal” things that go on within a family. Pray they keep themselves fed and physically and spiritually strong. Pray they know how many people truly love them and are here for them when they need it most.
I can honestly say that I know God will bring this family through this storm. Miracles happen every day and as long as we are alive we can believe and pray and keep the faith. Our God is awesome & the love He shows to us is … well it’s just HUGE !!
Shanna, Ryan, Jenna, Claire, and Layla – Your family has very quickly become a part of my family. I hope you know that whatever you may need, we are here for you. We love you all and can’t wait for a time when we can talk and hang out w/out even thinking about the “c” word. Stay strong sweet friends. I am thinking about you always !
With love – Sarah
** IF you are interested in helping the Marsh family out during this difficult time, please email fightforlayla@gmail.com – thanks!
Sun November 8, 2009 2:22 PM
via Twitter
Neuroblastic nodes are present in the fetal adrenal gland and peak at 17-18 weeks’ gestation. Most of these nodules spontaneously regress…
Sun November 8, 2009 2:23 PM
via Twitter
…and likely are remnants of fetal development. Some of these may persist and lead to development of Neuroblastoma. http://bit.ly/1OnI18
Sun November 8, 2009 2:26 PM
via Twitter
This is could possibly be why many babies tested for Neuroblastoma at birth show positives but do not develop the disease.
Mon November 9, 2009 8:16 AM
via Twitter
Getting Layla up and starting to pack for her 6 week long hospital stay. High dose chemo begins today and lasts round the clock for 4 days.
Mon November 9, 2009 11:59 AM
via Twitter
Pulling into the TCH parking garage. Layla is sleeping. I think I’ll take her 4 a walk outside to enjoy the fresh air b4 she’s in isolation
Mon November 9, 2009 12:56 PM
via Twitter
Waiting to see the dr then we’ll get settled in our room. We’re traveling heavy today trying to make it as normal & comfortable as possible
Mon November 9, 2009 11:58 PM
via Twitter
One mama told me she brought up her daughters favorite rocking chair from home. Not a bad idea!
Mon November 9, 2009 12:56 PM
via Twitter
Fluids have been started. Prepping Layla’s body for the massive amounts of chemo that will be started tonight and given nonstop until Friday
Mon November 9, 2009 2:03 PM
via Twitter
She will be given etoposide and carboplatin through her iv continuously for the next 4 days, along with daily blasts of melphalan.
Mon November 9, 2009 2:07 PM
via Twitter
She has not had Melphalan before. It will almost certainly cause infertility. The carboplatin will most likely cause further hearing damage
Mon November 9, 2009 2:30 PM
via Twitter
We just got in a room and Layla spiked a fever of 101. This is not a good sign – she can’t go into the transplant sick.
Mon November 9, 2009 3:21 PM
via Twitter
With layla’s fever, Dr. R doesn’t want to take a chance that she has a possible infection. She is getting a blood transfusion, a dose of…
Mon November 9, 2009 3:24 PM
via Twitter
…antibiotic, a nasal wash, respiratory panel and blood cultures drawn to rule out h1n1, any infections or viruses and line infections.
Mon November 9, 2009 3:25 PM
via Twitter
These results take approx 3 days, so Layla is going HOME. I’m so glad to have her home for a few more days, but upset too. She really…
Mon November 9, 2009 3:32 PM
via Twitter
…needs the transplant done this week to make it most effective. But, starting the transplant with an illness would most likely be fatal.
Mon November 9 – Transplant Woes
So, transplant was supposed to start today. After worrying about and dreading this day for weeks, it’s finally here. I was up most of the night last night, alternating between crying and feeling like I was going to throw up. I know this is what Layla needs, but it still doesn’t change the fact that it’s very scary and there’s a chance she won’t recover. So after weeks of anxiousness, the day finally came.
I rushed around to finish packing this morning, said goodbye to Jenna, Claire and Ryan and put my game face on. We arrived at the hospital around noon. The nurses took her vitals (which were perfect) and then we waited…and waited…and waited to see the doctor. Finally around 2:00 we saw the doctor and were sent to our room.
Upon getting in the room I unpacked everything. Since we were going to be here for 6 weeks, there was a lot to unpack!! Got all of Layla’s toys organized, all my toiletries lined up how I want them, clothes in the drawers…the whole shebang. We were here to stay.
Until…
Layla spiked a fever of 100.3. Seriously, we weren’t even in the room for 10 minutes.
After much deliberation between all of Layla’s doctors, they decided it was better to hold off on the transplant until we’re positive she doesn’t have any kind of infection. The chemo that she’s getting is extremely harsh and will cause her immune system to be destroyed. Destroyed beyond repair. The entire purpose of the transplant is to save her immune system after the chemo destroys it. There will be a period of about 2 weeks where she has no immune system at all. Any infection is potentially fatal. Sending her into this with any kind of illness would be catastrophic. She needs to be at 100%.
And she’s not. So we wait.
Waiting is good, right? Wrong.
The transplant is most effective when it’s done 6 weeks after the last round of chemo. Layla’s last round of chemo was 7.5 weeks ago. There were delays because of infections and new lines. In order for the transplant to still be successful, it needs to be done this week. So there are many risks to be weighed. Do we press forward knowing she might be getting sick, or wait to make sure she’s at 100%, knowing that each day that goes by is one more day the transplant might not be successful? We decided (well, I had no say – the dr’s decided) that it was best to wait.
They have taken blood for lab work and cultures, done a nasal swab and tested for H1N1. She is getting blood right now then she’ll get one dose of an antibiotic. Then we go home.
Once those results come back negative (please God, let them be negative), we come back to start this process all over again. Hopefully that will happen Wednesday or Thursday.
I’m so thrilled to have her home another day or two, but at the same time, this has been so emotionally draining and I wish we could just get it over with and put it behind us. I know God’s timing is perfect so I’m trying to remember that there is a reason this is being delayed. As much as I don’t like it, there has to be a reason.
Mon November 9, 2009 5:38 PM
via Twitter
The chaplain just came in. Through a friend of a friend, she gets email updates about Layla, and has already been praying for her
Mon November 9, 2009 9:09 PM
via Twitter
Layla has about another hour left in her blood transfusion then we get to go HOME!! Another night in our own beds. Yeah!!
Mon November 9, 2009 10:33 PM
via Twitter
Transfusion complete, paperwork signed and we’re headed home to await test results. Hopefully they all come back negative!
Tues November 10, 2009 9:08 AM
via Twitter
Layla’s blood count was pretty low yesterday – 7. Normal is 12-14. After her transfusion she’s now at 10 and feeling much better!
Tues November 10, 2009 9:09 AM
via Twitter
She ate a decent breakfast and hasn’t had another fever. Hopefully tomorrow we’ll be re-admitted.
Tues November 10, 2009 10:33 AM
via Twitter
We’re at target. Layla was laughing & talking. I looked down & looked back up just in time to watch her throw up all over the floor. 3 times
Tues November 10, 2009 10:34 AM
via Twitter
Waiting for the dr to call me back
Wed November 11, 2009 10:27 AM
via Twitter
Just got a call from Layla’s dr. Labwork and tests all came back negative. She’s being admitted at 1pm and chemo will start tonight.
Wed November 11, 2009 10:29 AM
via Twitter
Feeling relieved that it’s happening and we can hurry up and get it over with. Also feeling very scared and worried about the next 6 weeks.
Wed November 11, 2009 12:38 PM
via Twitter
Layla enjoying a yummy lunch with mom and dad before heading to the hospital
Wed November 11, 2009 12:41 PM
via Twitter
The chemo makes her 2 sick 2 eat & then causes mouth/throat sores that make it impossible to eat. Layla just ate her last meal for 6 weeks
Wed November 11, 2009 12:42 PM
via Twitter
She will b given tpn & lipids through her iv the entire time she’s admitted. It doesn’t make her feel full but gives the nutrients she needs
Wed November 11, 2009 4:17 PM
via Twitter
We’re settled in our room and pre-hydration for chemo is being started. Layla is busy coloring and watching movies.
Wed November 11, 2009 6:10 PM
via Twitter
UNBELIEVABLE!! Layla has the flu so we’re being sent home…again! She can’t start transplant for at least 7 days which might put her in…
Wed November 11, 2009 6:11 PM
via Twitter
…the range of a “non effective transplant”. There’s a small window when transplant is successful and this delay might just put her…
Wed November 11, 2009 6:11 PM
via Twitter
…outside of that window. Will meet with Dr. R this week and see what our options are. For now, we go home for at least 7 days.
Wed November 11, 2009 6:53 PM
via Twitter
Just signed discharge ppw. The further delay means Layla will not only be in the hospital for her b-day and turkey day, but Christmas too
Wed November 11, 2009 6:54 PM
via Twitter
I’m so upset and dissapointed and poor Layla is so confused.
Thurs November 12, 2009 8:44 AM
via Twitter
Layla is in a great mood. No signs whatsoever of having the flu. I guess after what she’s been through, the flu is like a mild cold to her
Thurs November 12, 2009 3:26 PM
via Twitter
She's only 19lbs so of course I give her these anytime she asks! It's one of the only things she'll eat.
Thurs November 12, 2009 6:33 PM
via Twitter
Just changed layla’s dressing. I don’t know who cries more, me or her. She however, forgets about it much quicker than I do.
Fri November 13, 2009 9:13 AM
via Twitter
Layla’s sisters both woke up saying “I’m sick”. Layla woke up saying “I feel good”. No need to point out the obvious.
Mon November 16, 2009 9:32 AM
via Twitter
Waiting for Dr. R to call me back so I know if transplant will happen today. Layla is in a fabulous mood!
Mon November 16, 2009 11:42 AM
via Twitter
3rd time is a charm?? Heading to TCH for 3rd attempt at transplant. Dr. R said although she would have liked to start 2-3 weeks ago, we…
Mon November 16, 2009 11:43 AM
via Twitter
…are going to move forward without trying more rounds of chemo. She needs to have the transplant then we’ll move forward depending…
Mon November 16, 2009 11:45 AM
via Twitter
…on the results of scans taken in the new year. I’m faithful those scans will show NO tumor!!
Mon November 16, 2009 2:01 PM
via Twitter
So Layla is being sent home AGAIN. Dr. K wants to wait until Wednesday which will be 7 days after her positive flu result.
Mon November 16, 2009 2:03 PM
via Twitter
This is just comical now. I’m learning though, and only brought up a small bag of toys. The first 3 times I lugged everything up here.
Tues November 17, 2009 9:02 AM
via Twitter
So excited that Layla was home to enjoy our 1st day of cold weather. She loves wearing her "fuzzy boots"
Wed November 18, 2009 9:24 AM
via Twitter
Thanks to Boasso America Houston. They had a blood drive in Layla’s name and had 30 employees donate blood!! Many lives will be saved!!
Wed November 18, 2009 11:10 AM
via Twitter
Heading to the hospital for transplant…again… I have never wanted this transplant to happen as badly as I do today. It must start today!
Wed November 18, 2009 1:09 PM
via Twitter
Meeting daddy for lunch for Layla's last good meal for a while. Can u tell how excited she is to eat?
Wed November 18, 2009 1:53 PM
via Twitter
Done eating. Cleaning her hands on daddy's shirt. He has to go back to work...oops
Wed November 18, 2009 3:43 PM
via Twitter
We pulled into the parking garage and Layla threw up. Dr. K wants to go ahead with the transplant b/c the risk of putting it off longer…
Wed November 18, 2009 3:44 PM
via Twitter
…is higher than the risk of a possible infection brewing. He thinks the vomiting might just be an aversion to the hospital, but she will..
Wed November 18, 2009 3:46 PM
via Twitter
…have all the tests for viral & bacterial infection, flu, RSV and strep done again just to make sure.
Wed November 18, 2009 3:47 PM
via Twitter
Chemo should start tonight and she will have the actual stem cell transplant on the 26th, which is Thanksgiving Day and her 2nd birthday.
Wed November 18, 2009 5:30 PM
via Twitter
We just got settled in our room. Layla ate dinner…then threw up again. Waiting to hear from Dr. K if he wants to move forward w/transplant
Wed November 18, 2009 5:45 PM
via Twitter
Dr. K said that from a neuroblastoma stand point we must move ahead with transplant even though she is vomiting. The longer we wait, the…
Wed November 18, 2009 5:47 PM
via Twitter
…greater chance of the cancer recurring.
Wed November 18, 2009 5:55 PM
via Twitter
Starting pre-hydration fluids and giving zofran. Layla’s blood count is 7.6 so she will be getting a blood transfusion tonight as well.
Wed November 18, 2009 5:57 PM
via Twitter
She’s been given a prescription bubble bath soap and lotion that kills staph and bacteria on the skin. She’ll have a daily bubble bath :-)
Wed November 18, 2009 6:56 PM
via Twitter
Geez, Layla has thrown up 3 times already and chemo hasn’t even started! It’s going to be a messy next few weeks :-/ poor Layla!!
Wed November 18, 2009 8:04 PM
via Twitter
Hubby came up with the mini fridge, & had to take it back home. They’re not allowed in the room. Now I see lots of take out n my future :-(
Wed November 18, 2009 8:06 PM
via Twitter
Layla’s temp is 99.1. I feel sick that I’m sending her into this transplant possibly ill. Please pray that it’s anxiety & she’s not sick
Wed November 18, 2009 9:33 PM
via Twitter
The first bag of chemo was just hung… I’m on puke patrol now. The other 2 will be hung in a few minutes. They’ll all 3 go until Sat night.
Wed November 18, 2009 9:53 PM
via Twitter
Bags 2 and 3 being hung now. Layla is still sleeping.
Wed November 18, 2009 10:54 PM
via Twitter
Blood pressure was just taken. 80/40. Still w/in normal range but on the low side. They’ll start taking it every 15 min instead of every 30.