Monday, March 31, 2014

Day 5 & 6

Day 5

These kids have been troopers. It's been a rough week and they've been along for the ride. Playing in masks, hanging in a tiny hospital room and feelin the love. This has been the most interaction Taleah has given anyone in the last 6 days.... I'm thinking these babies will be a giant blessing through this trial. She is continually asking when they will be here and usually wants them to stay longer (unless they cry for too long). Today has been the best day by far and I can't help but think it's because of the prayers/fasting on our behalf.

Taleah's counts have been dropping, which is what we want. Her platelets were really low today so she had a platelet transfusion. It always reminds me how grateful I am for people that donate platelets and blood. It is truly saving lives. This is her second transfusion this week. We always pre-medicate her with Benadryl before due to the high chance of a reaction.

Day 6
This is the last day of steroids. The hunger has finally set in. She has made some pretty rude remarks and has very little patience. She seems like she is almost in a daze and just not herself. I have to remember that the steroids have always done that to her. I just hate that she isn't her spunky little self. I keep thinking that I wish I would've embraced and loved her spunky attitude at home, I wish I would've spent some more one on one time with her when she was feeling good, I wish I would've worried less about a clean house and got down and played with my kiddos. I know I can't wish for things in the past, but man this really makes ya think... and wish.

We have had some visitors and enjoyed the company. She hasn't been very social but has made some comments and answered some questions. This is progress. She is not freaking out when people come in the room and is cooperating for most things.
She is already losing weight and her little muscly body is almost no longer. She is starting to look pale and "sick". I don't know why my stomach sinks every couple of times I look at her and I reminded of the situation. I know what is happening and what to expect, but I still do it. Crazy what can happen in 1 week!

We are currently awaiting more chemo and procedures, waiting for the results of the kiddos and potential matching, and praying that her body is doing what it is supposed to.
I am receiving a lot of uplifting quotes. They are very helpful especially when I let my anger/bitter attitude get the best of me. This may sound crazy, but my mind wanders to the worst place at times. It wanders to what could be, what ifs, and lots of other sad/crazy things. I know that it's pointless and not my choice/plan. I still do it, but it's nice because these quotes bring me back.

❤️ It will be alright in the end, trust in God and believe in good things to come. ❤️

Saturday, March 29, 2014

Day 3 & 4

Day 3 actually had a few happy moments. She played on the iPad for a minute, laughed about the emoticons that she put by family members' names, smiled while holding the twins, ect. I had a glimmer of hope in those moments. I thought for a second that we could do this... and then I changed my mind... and then changed it back.  

 It is pretty sweet to see her with the twins even when she isn't feeling well. They love seeing her and she perks right up when they come in the room. Unfortunately, she doesn't feel the same way about Slade at this moment. He was driving her crazy because he moves too fast and is too noisy.
 She seems to be pretty tired and has a hard time sitting up for a long period of time. I am hoping that is only because of all the crap that is going through her system. Nights are a little rough because she is being pumped with so many fluids right now to try and push that chemo through. She is peeing every 1 1/2 hours and that makes for a long and eventful night. As if sleeping in a hospital isn't bad enough.

Her blood pressure is still a little high (which I attribute to her panic attack every time a medical professional walks into the room). She is on a med for that and had an EKG to see about her slow resting heart rate (47-65). She screamed the whole time and I was told it looked fine, but also that it wasn't even useful because she was screaming. Hmmm...
 I loved having Slade here, even if it meant that I only had a couple of hours with him each day. I can tell that this is going to be very hard on him. He loved the new adventures but also wanted to go home. We had a pretty good routine going at home and my kids thrive on that. This new journey will really test their abilities to adjust to "new routines". As much as it hurts my heart that Slade will only be here on weekends, I know that he will be better off in Saint George with Scott (part time) and family. Honestly, it kind of rips my heart out knowing that he won't be going to me when he gets hurt and needs a love or finding me to show me his latest trick or find. At least he will be going to family, but it feels like that is my job as his mommy and I am not going to be able to do that part of my job. Man, this is hard. Also, the twins should do a good job adjusting and just go with the flow because they have to. Again, it is hurting my heart that I will prob get 3 hours max with them each day. I probably won't be the one taking pictures of them rolling over or watching them sit up for the first time. I probably won't know their ever changing routines and quirks. I just hope I don't forget how to comfort them when they are sad or how to make them smile/giggle. I know it all sounds silly but these are some of the things I am fearing most. Of course I am the most concerned about Taleah and her well being. The thought of what "could be", just about puts me over the edge. I love her so much and am hoping for the best, but I worry for my other kids too. I feel pretty lucky that I have family that is willing to drop their lives for part of the week and make it so I can see my other kids.

We have been getting ideas and tricks from fellow families on how to make this place feel a little more like home. We have started decorating and bringing color in the room in hopes to lift her spirits. We can't wait to have miss Cami (relapsed ALL cutie that has just completed a bone marrow transplant) here again to share with us some of her favorite tips/tricks.

Overall, we are doing pretty good. Taleah is handling it as well as possible. On day 4, she still has a lot of anger and hate for most of the world. I don't blame her. I am just hoping I can bring some light into her life and make her feel special and loved. She is a stubborn girl so she can do this again. There has got to be a reason she was blessed with so much spunk!

Friday, March 28, 2014

Day 2

Taleah is still not feeling well. She is very ornery, bugged by everyone (especially the medical professionals), and pretty much has shut down. I don't know what to do to help her. She only wants me to sit right next to her... which I am happy to do but she is going to have to get used to her dad and grandmas sitting with her as well. I need to spend a little bit of time with my other kiddos. I am going to try and talk with people to see if we can get a psychologist or some music therapy going to help her. I don't blame her for being mad. I am mad too. It really feels like it is ripping my heart in half.

We received the news about her CSF (cerebrospinal fluid) and they did find 6 leukemia cells. She didn't have any before. It wasn't what we wanted because now we will have to add more chemo and additional procedures (LPs and possible radiation to her brain). They are saying that it is a small number compared to most that they find, but they are still there which isn't fabulous.

The 3 other kiddos had their blood drawn today to see if they are a match for sweet Taleah. It would be the best case scenario so I am really hoping something works out. I won't lie and say that I am totally confident and positive because I feel like all odds are against us at this point. I know that is a terrible way to look at it but it's how I feel. I am hoping that changes quickly.

Taleah is still on oxygen (0.5 liters) and her blood pressure is a little high so they are medicating her for that. She is quite swollen from the fluids and now the steroids as well. Gotta love those steroids.

We are very grateful for the most amazing families ever. They have been more than helpful. I love that Slade is being cared for in Saint George. I love the picture updates, the facetime and phone calls. I miss this boy like crazy and seeing him on weekends only will be hard... but temporary.

Scott's dad surprised me and brought Slade up to see us. I teared right up and wanted to hold him all night, but couldn't because Taleah wasn't wanting anyone around. He said he wants to shave his head when Taleah shaves hers. Pretty dang cute that he already agreed to it.

She will receive another chemo on day 3 and then have a little break until day 8. I am hoping that she will adjust to this new "normal" and we can make things fun around here.
Side Note....
I have had a lot of people inquire about being a donor. We are hoping that one of her siblings will be a match, but we will not know for another 2 weeks. IF you are wanting to get on the national registry (where we will go if our kids aren'...t a match), go to They will send you a kit, you can swab your cheek and send it back. They will send it for free or you have the option to donate. It may be too late to donate for Taleah at this point, but it may not. Please get on the registry if you would be willing to donate for Taleah and/or another child. Thanks so much for all of the love and support!

Wednesday, March 26, 2014

Day 1

Today is officially Day 1. She fasted all morning after having a rough night of fevers and pain. I could barely hold it together as I watched her in pain. I am told that a lot of the pain is from the leukemia taking over her body, which we hopefully get rid of soon and only have to deal with the pain/side effects of the chemo.

She is old enough now that she is listening to everything they say and I can see it breaking her spirits. I am not quite sure how to handle this as her mom.
She went in for a PICC line, Lumbar Puncture with intrathecal methotrexate and a bone marrow aspirate (which they are guessing is about 80-90% leukemia cells). I hated that I had to send her off for more of that when I was the one that told her we were done just a few short months ago. She is now sleeping and trying to keep her O2 sats up. I can tell that she is devastated, sad, scared and not quite sure how to process it all. She isn't loving anyone coming into the room, she is scared of everyone and what is to come.
Because she relapsed so soon after finishing treatment, her chemo rounds will be a little more intense. She will be losing her hair soon (which I am not even sure how to deal this time around). Today and tomorrow we find out her CSF has leukemia cells in it. She didn't have them at diagnosis but this is a whole new ballgame. They said they detected 6 WBC in it so they had to send it for further testing. IF she does have them, it's not great and they will change her course of treatment a little bit. We are starting all of the chemo, steroids and hanging out in the hospital room. We will test the siblings tomorrow. So much happening and so much to wrap our heads around.
Thanks again for your prayers. We sure can feel the love.

My Biggest Fear

I guess you could say that a mother's intuition means something. Taleah had been acting "off" for the last week. I had a terrible feeling going into our upcoming appointment at PCMC. I even shared that with my dad and I don't think that he liked hearing that from me. We headed to PCMC (Friday), did the routine "stuff" and the labs showed that her platelets had dropped a little. Dr. Barnette didn't seem concerned and even looked under the microscope and had a great explanation for it. Taleah even rang the bell because she was cancer free! I still left feeling a little uneasy and couldn't figure out why. Now I know. She started fevering the following Thursday and it continued and hasn't stopped. I began obsessing over ALL information, dropping platelets, contacted other cancer moms, and couldn't get it out of my mind. I even texted our pediatrician on Saturday asking if I should get her labs drawn again. He wanted to wait until Monday, which I am glad that we did. We were all thinking/hoping it could be a virus that was causing the drop in platelets (that is a sign of relapse... along with a jump in WBS which hers had done as well). I just knew in my gut that something wasn't right. Labs came and I kept checking for the results. I honestly couldn't function. My MIL had to take my kids because I made myself physically sick over it. After a few phone calls and lots of tears, it was confirmed. We were expected at PCMC the next morning at 8am. The drive was long and trying to break the news to her was devastating. She became very quiet and wouldn't talk about it. That was one of the hardest things I have had to do. PCMC wanted to do their own testing to confirm it. There was a small chance that it could be a crazy virus but I knew it wasn't. Of course I hoped for that, but hearing the confirmation again was a giant blow to my stomach. Watching Taleah hear it all just about ripped my heart in half because this time she has a better idea of what is to come. We continued with an x-ray, labs, and making her comfortable. Her blood had about 50% leukemia cells. We would await the procedures to come the next day to have a better idea of what we were dealing with. I am having a whirlwind of emotions. I am angry, so sad for Taleah, sad for my other kids, mad, heartbroken and a little hopeful. It is a lot harder to feel "hopeful" this time when the odds were so good before and she was in the 8% that relapse. How can this be?! It is not anything that I ever hoped for and didn't "see it coming" until a week ago. I am religious, I believe in a loving Heavenly Father but I am struggling a little right now to understand WHY!? I know we don't always understand everything that he has in store for us and you would think that I had it down... BUT I don't! My biggest concern is being able to be a mommy to Taleah, but also to my other kids. I can't be away from them for 7 months. The first month is critical! We need to get her body into remission after the first 28 days. This will give us the most hope. IF that happens, we will have finished one round with a week at home to follow. We would have 2 more rounds simlar to that. All of which will be done at PCMC. IF all goes according, it would mean preparing her for a bone marrow transplant (which would happen after the 2-3 months of inpt chemo). We will be testing our 3 kids this week to see if they are a match for sweet Taleah. A sibling match would be the best case scenario (the babies would have to be a certain weight as well). It wouldn't be dangerous for them to be her donor. We also have Tait's cord blood that we could test as well. Sloan's isn't viable because his was wrapped around his neck and we had to cut it at birth. The transplant would be approx 35-60 days inpt and then staying close to PCMC for another 40-50 days after that. It is a long road, a scary road and we are praying that all can go accordingly. We appreciate all of the love and support that has already been offered on our behalf.