Tuesday, August 19, 2014

Lately (Day 47-65)

The first few pics were supposed to go with the last post… just the amazing friends, hospital staff and family that we have.

These next few pics were taken right before the transplant. They are some of the most treasured pictures that I have. Taleah loved every minute of it. I love seeing that bald head and it brings an overwhelming amount of emotions. 

It has been a roller coaster as usual. Scott was able to spend a little over a week up here with us and it was wonderful to be a family. It is always more stressful when Taleah doesn't feel well. She started feeling better the night before he left and it made the week without someone staying with me much more bearable. She was almost back to herself at times and I was more than thrilled. She was taking selfies, dancing, making up cheer routines… which are things she used to do. I can't even describe how happy I was to see some of her spunk coming back. I mean this happened about 4-6 hours of the day which was a huge improvement.

The labs are continuing to look pretty good. It seems as though things are on track. She doesn't love going to clinic except for the crafts that pass by the time. Her broviac line has been giving us some trouble. It doesn't always want to draw blood, which is a problem. It seems like we have been trying everything to get it to draw. We just need it to cooperate. 

Taleah also had her first lumbar puncture post transplant. She handled it pretty well. They found some white cells in her CSF, tested it for leukemia cells and luckily they were not. They explained to me that it was inflammation in the spinal column and it was very common. They also told me that we would not be continuing these LP's due to the white cells. I am not sure how I feel about that, but apparently it will do more harm than good. When I told Taleah that she didn't have to have any more, she replied, "They really don't bother me, but I just hate the bandaids." Good for her and sad that they don't even phase her anymore. 

I left to Saint George for the weekend while she stayed with my aunt and then my mom. She was thrilled to spend one on one time with them and informed me that she needed a break from all of us. Ha. I needed to move Slade back so that he could start pre-school and soccer and feel "normal".

It felt so good to be in STG. I loved being at my own home. I miss it so much. It didn't feel right because Taleah wasn't there, but it was a great reminder of how much I want to be home with my little family. All 6 of us. Soon enough.

I must say that Taleah was a little heartbroken when she saw all of her friends going to kindergarten. She asked me why she had to get cancer. I hate when I don't have an answer for those kinds of questions. I decided that we would have "kindergarten" at our apartment. I have a few supplies and I can play pretend. She enjoyed getting "ready" and came ready to learn. It lasted about 20 minutes because her energy level has been going back down. It was a moment I will never forget as a mom. I want her to feel normal but I am not sure if that helped or made it worse. 

She is such a sweet girl and it totally sucks that she can't be like the other kids. Just a little slap in the face that cancer has total control of our lives. Ugh. Not for long though… that's what I keep telling myself. We talk about the things she will do once we get back and the activities that she wants to be a part of. I keep trying to give her things to look forward to. 

The past few days have been rough. Slade started preschool and I was SO sad that I couldn't be there to take him. I feel like that is my job and I can't do it. Scott was able to take him and I know Slade loved that so it is really nothing that I should worry about. Aside from why I was having a rough time, Taleah is really having a rough time. She has been fatigued, nauseous, and throwing up. I feel like we can't get caught up on the fluids and eating and we have fallen too far behind. Luckily, we have clinic tomorrow and hoping some fluids will do her some good. She is losing weight and it is hard to see her just skin and bones. I miss her little chunk. She can hardly even get up to go to the bathroom. It seemed as though we were headed in the right direction and now it feels like we have taken 5 steps back. 
We do dressing changes at home once a week… and I pointed out at clinic last week that her line has been slowly sliding out of her chest (it's not supposed to do that). As I was changing her dressing, I noticed it had slipped even more. Well, when I turned to grab the new dressing to place on… I looked back and her line is slowly coming out. I immediately stopped it, but didn't know what to do other than put the dressing back on. This is something we will definitely address at clinic. I don't even know if it is in the right place anymore. Ugh just one more thing to stress about. 

Today has been rough so I am feeling a little down about things. We still have a good 40 days up here. We will be doing her bone marrow aspiration on September 10 (day 85) and it will take about a week to get those results. Those results are key in telling us if the transplant is working/as worked. We would love for it to be 100% donor, but only time will tell. If things look good, then we can come home. I am trying to focus on getting us there. I miss Slade. I miss Scott. I miss my jobs. I miss being a family. But this is all worth it if we can cure Taleah and have our happy, healthy girl back. 
Positive thinking.
 Rely on Miracles.

Monday, August 4, 2014

Surviving- up to Day 47

This rollercoaster ride sure has some good moments. The concert in the hospital was definitely one of those moments. It was extremely humbling and touching. These kids were all confined to their rooms and making the best of their night. They opened their doors and shared their talents. Kids ranging from 2-17. I wish I had all of it on video. Here is a link to a small part of it and it is pretty obvious that these kids are special.

There is just something about PCMC. You never want to be there when you are trapped there, but at the same time it is a really special place... and has a really special feeling about it. The people that work there are all angels and make it so much better. Taleah had her "favorites" but never really had any that she disliked. I had my favorites as well and those nurses will forever hold a special place in my heart! I mean, we practically lived with them for 4 months. You can never get away... when you are sleeping, when you have to use the bathroom in the middle of the night and make the long walk down the hall, when you are brushing your teeth or taking make-up off, ect. There is always someone. They see the good and the bad, the happy and the sad, the pretty and the ugly. They know way too much, but still make ya feel like they aren't even judging. It's great. They really are great. Taleah wanted to make a music video of the nurses to a song she loves (don't judge me for the song she chose). They were such great sports and played right along. I had to share the video so everyone can see how awesome they really are (I really wish I wasn't in it... the things we do for our kids).

As for Taleah... it has been a rough week. I guess not has rough as weeks before, but you just hope and assume that she is going to be better now that we aren't in the hospital. It is a long road ahead and I have to remember that this is a marathon not a sprint. Ugh.. that patience again. I think the poor girl feels like she will never be normal again. She keeps asking me questions about when and how long. I think she is trying to grasp how long life will be like this.
Some days are better than others. I would say, on average, she has about 3-5 hours a day that she feels pretty good. Pretty good meaning that she will sit up, on the ground or at the table and do something (play game, color, craft). The rest of the day she prefers to lay on the couch or in the bed and "watch something" (she doesn't really watch). They are encouraging her to get up and move but it is really hard to do. We are also encouraging eating/drinking and that is a task in itself. We have her on fluid at night this week because of the cold she caught and I think it has made a difference. No food sounds good to her and she would prefer to eat 1 or 2 bites and I have to force an additional 6-8 bites. It is a constant battle. Her temp has been a little higher than her norm and it gives me anxiety. Fevers are not taken lightly so sleep has been limited because I felt the need to take her temp all night long. I am hoping it is her body fighting the cold, but ya never know.
 The pills... oh man. It is a battle every morning and every night. She takes between 8-12 every morning and night. I wrap them in starbursts every Sunday (takes me about 1-2 hours to prepare the pills for the week) to make it easier for her so I can't imagine what it would be like to do it without... which I am threatening at this point because I am sick of the battle. I know she hates it and so sick of it but it goes back to the concept that we are doing all of these crappy/hard things to try and save her life. That is hard to fully explain to a 5 year old, but I think she gets more than we give her credit for. She is a smart girl.

We will go to clinic for our weekly appointments and we will check labs again. They say that her labs are looking great so far and even better than average at this point. That is great to hear, but I am not sure that I will ever rest easy again. Again, that is no way to live so maybe once we get to Day 100 and know that she is 100% donor and then I can feel a little better. She will receive 4 more Lumbar Punctures with intrathecal chemo (which is routine) over the next 8 weeks. I really really really wish that they would let us return to STG a little sooner than 100 days. This living apart thing is not very fun at all. It seems very rare that just the 6 of us are under one roof. I miss that. I miss being a family. I know the time will come, but I still miss it and yearn for that day.

We are super grateful for the people in this world. The amazing family and friends. The amazing strangers that are so willing to give. There is NO way that any of this would be possible. Especially the days when I have a bad attitude and pity our lives. It's so lame that I get that way, but those amazing people always change that around in no time at all.
Taleah is lucky to have so many that love her and support/pray for her.
We always talk about that day that we can give back and help others.
That will be the day! Can't wait!
(my dumb computer won't let me upload pictures... next time because I have some good ones)

Friday, July 25, 2014

Adjusting- up to day 39 post transplant

I guess you could say I am a homebody. I've never loved vacationing too long with kids because they don't sleep as well, we are out of the "norm" and it is exhausting. Ironic because that is what we are doing and have been doing since March. I love my routine, I love STG and I love being around people that I love and feel comfortable with. This is all pushing me past my limit and challenging me in so many ways. I am learning to make the best of our situation and "be happy" with what I have been given. People keep saying that home is where you make it. Oh I am trying. To say that I am happy all of the time would be a lie. I wish I could say that I am doing everything I can and am super happy but I don't and am not. There are times that I feel sorry for myself, there are times that I cry watching Taleah suffer, my anxiety is through the roof (I prob need meds), Taleah struggling with pills and seeing her throw up over and over, being without Scott and the kids crying because they miss their dad and the stress of it all... it gets the best of me sometimes. Luckily, we have the best support system ever! They make it possible, they lift us up and pick me up over and over again. I guess I just want to document the realness of this all. It totally sucks and is super hard, but we are learning and growing. Taleah is seriously a rockstar and pushing through and getting stronger, Makes me proud.
Being with all of my kiddos makes me happy and keeps me going. It is totally exhausting and kicking my trash, but is worth it to be under the same roof. I had a day and a half by myself with no help and I was up for the challenge, It felt good that I did it and survived (it sounds so dumb that I was able to care for my 4 children by myself...slightly pathetic but an accomplishment).
We aren't able to do a lot, but we can spend time on iPads, play games, play on the grass, have dance parties and craft. 
 We have had weekly clinic appointments and labs are still looking good. Very grateful for that and glad that it appears that her bone marrow is working and growing.
Unfortunately, Taleah caught the cold that has been going through our family. She started with a runny nose and a dry cough. We did a nose swab for a viral panel at clinic and tested positive for Rhinovirus (common cold) but they said to keep a close eye on her. She had a temp that had been hovering around 99-99.5 for 2 days. I had a feeling that a fever was coming. She ended up slightly fevering so I had to call and give the information, and that resulted in an automatic admit for at least 2 days.
Just when we were getting cozy at home and adjusting to a new routine... bam! Freakin cancer. It does that. It ruins all plans, catches you off gaurd and kicks ya in the gut. Poor girl. She was loving her life outside of the hospital and back we go. However, we were bummed at first but then we walked in and it felt like home. Weird right?? I was a little confused that I felt that way, but I did and thought that we better embrace it. Taleah is a great example of that. I seriously keep thinking that I am not cut out for this and then I look at her it reminds me that we can do this. I know that this is not my journey and I am not suffering half as much as she is, but it really does have an impact on all of us. She is doing the hard parts, she is enduring all of the pain, and she is rocking it. I mean she struggles with the pills and we battle it for about 20-45 min every day (twice a day) and she has moments where she feels like crap but she is making the best of it. I am a proud mommy and learning from her every day.
 We are really hoping that the fever is a result of the cold and that we can get out of here at 48 hours. We are where we need to be to keep her safe... just in case. It feels alright to be at our second home away from home.
We can do hard things (my attempt at a pump me up, positive saying, positive thinking... I think it is working)!

Sunday, July 20, 2014

The last little bit... (Day 23-34)

Needless to say... things have been a bit crazy.
The week after her ANC hit 500 was an emotional rollercoaster. Her bone marrow seemed to be working but her ANC was not cooperating. Everything else pointed to the fact that her ANC would be well over 500 but it was not showing that. Taleah still felt decent part of the day and pretty crappy too. She still threw up a couple of times a day. She LOVED getting out and socializing with everyone.
We even had playdates with some other cancer kids. A late night meeting to "bling" their masks.
I was still a bit of a mess because everyone was convinced that day 21 was going to be engraftment day. I am a planner so when it didn't go as everyone thought... I was a disaster.
Because they thought it was happening... we started lowering her morphine dose, taking pills orally and all of the steps to be released from the hospital.
Engraftment day ended up being day 25. Yay! We were so happy. We had pretty much completed all of the steps to be released so they let us go on her "engraftment day". Apparently, we did things a little backwards. Regardless, we were busting out!
Taleah was able to ring the bell before we left. Everyone was cheering and sang a song. The second she started walking to the bell, I could barely hold it together. It was so emotional. They told her to ring the bell once they were done singing the song, but she rang the bell to the song. It was awesome!
We had plans to move to a basement apartment in Highland. Some things happened and it fell through the night before we were being discharged. I was devastated and stressed. The planner in me was upset that my plan had been changed yet again. However, it was because of something personal and serious so I was understanding.
Now we were on the hunt for something quick... and I felt "homeless".
 Luckily, we have some awesome friends that we have been staying with for the last 3 months. They graciously offered their place until we found something else. We were totally packed up and living out of boxes but at least I felt like we had a home for a minute. We absolutely adore their family and know that we will never be able to repay them. Pretty awesome peeps if ya ask me.
We have an awesome support group and social media was a huge help in our search for a temporary home. A lot of really great people pulled together and found us something that has turned out to be great. I am constantly in awe of the gracious people in this world. It feels good to have a "home" for the next couple of months.
Let's just say that I was a little nervous to leave the hospital. I would be required to be a mom, nurse, caretaker, cleaner, ect. Kind of a lot. Leaving the hospital was bittersweet because we had lived there for so long and the nurses took such great care of her! The knew it all, did it all and then I was all of a sudden responsible. Talk about pressure.
The meds alone are a giant responsibility. I spent about 2 hours on our first night home getting everything ready and prepping meds for the week. She also went home on TPN because she wasn't eating yet so that added another thing to be responsible for.
We had to keep the babies separated from Taleah for a little bit longer due to their constant runny nose. I hated the fact that we still couldn't be a family. We had a family reunion that was very accommodating for Taleah and what she could and couldn't do. She wanted to go but felt like crap the entire time. There were a few good moments that made it worth it, but also broke my heart at the same time because she couldn't be like all of the other kids. Sadly enough, she didn't even care.
She has been having more hours of feeling pretty good every day. There have been evenings that she has wanted to ride a tricycle and walk around the yard with the kids. She has been wanting to sit up and craft, play games and paint nails. This is huge. It doesn't last all day, but some is better than nothing.
Taleah does a lot of hanging out. I think this is because of the way she has grown up, being surrounded by adults and teenagers because she hasn't been able to play with kids. She has come to adore Nathan and Sadie. She would always sneak upstairs to chat with Sadie about who knows what. Again, this family has been a blessing in more ways than one. They have been more than a house to live in. They were a huge part of Taleah's recovery.
I am enjoying the fact that she is wanting to do stuff and be a part of things (some of the time).
She still throws up at least once a day, she waddles a little bit, has a hard time smelling foods and is hardly eating at all.
 It feels so good to be out of the hospital. It feels so good to have my littles under one roof, but it is SO exhausting. I feel like I am running low but I know that I can't run out. It is not an option. I am independent so it has been very difficult to accept endless help from everyone. I so badly want things to be "normal" again but I know that will come in time. I just want to be on my own, be my own mom and be able to take care of my kids by myself. I know that it will be hard. I know that it is much easier with extra hands around, but it is something that I am longing for. I am not saying that I do not appreciate the help. I know that it is a huge sacrifice for everyone that is taking time away from their lives to come up here and help me. I am forever grateful! I am not even sure how to explain what I am feeling.
As far as the bone marrow transplant goes... we will continue to do weekly visits with lots of blood work. It is looking like it is working but we really won't know until we do the bone marrow aspiration around day 100. That will be able to tell us how much of her marrow is her donor (which we hope is 100%) but it doesn't always work that quickly or efficiently. Right now we are trying to keep the meds just right, keep her healthy and wait. We will keep waiting for something that is essentially out of our control. I can give the meds and do my best to keep her healthy and build her strength, but that's it. That is all I can do. The rest is not up to me. I guess I am a control freak so it is hard for me. Patience. Still trying to master that one.
I would say that she is doing pretty darn good. She is so tough and pushes through when I know I would give up. I am sort of a mess but trying to get it together.
 Organization and routine are going to get me through the next few months.
I need to remember.. to Rely on Miracles. 

Tuesday, July 8, 2014

Day 22- minor setback

The past couple of days have been a little rough. She has struggled with nausea, diarrhea and pain. We have been slowly lowering the pain pump and taking out nausea meds. She has also started taking a few things orally. Watching her suffer some more is still heartbreaking. It doesn't get easier.
The plan was to start shots that help boost the immune system by day 21 if she wasn't an ANC of 500. I was so excited when we woke up and received the news that she was 500. YAY!! They would consider it engraftment (accepting Tait's marrow and building an immune system) day as long as the following day was 500 as well. Everyone was so excited!
She was allowed to leave the room for the first time in 24 days. She was so excited to ride the bike and actually felt good enough to do it. She was going pretty strong for 45 minutes.

She was excited to give a matching elephant to a little friend a few doors down. They are close in age and I think she was just excited to see another kid. Made me happy.

We went to bed really hoping that the next day would bring good numbers. She even prayed that she would stop throwing up and have a good ANC. It made me so happy to hear her pray for that but also a little nervous because of the what ifs. I think she is excited to be discharged and be a little normal.
It is also difficult and I have mixed emotions about the fact that my other kids are sick. Runny nose, cough, ect. It sounds like no big deal but it is a HUGE deal for Taleah. I want to be a family so bad but I have to try and be level headed and do what is best for all of us.
I wasn't thrilled when they came in and said her ANC and WBC had dropped. The ANC is 400 and it needed to be 500!!! Dang! However, the platelets had risen on their own and the monocytes had stayed the same (I wouldn't know what any of this meant if I wasn't a cancer mom). It is good that everything didn't drop but I was crushed. I wanted everything to keep going in the right direction. She is still having more diarrhea than they would like. Something we will be watching for is Graft Vs Host Disease (GVHD). I really hope that is not the case, but we will just wait and see. 
If her ANC is 400 again tomorrow, they will most likely do the shots to boost the immune system. I hear it is fairly common but I just wanted her to do it on her own SO bad.
This is all a reminder that this is all out of my hands. It is so hard to watch her suffer. It is so hard when things don't go the way you have planned. It is tough to miss my other kiddos and not be there for them when they are sick. Ugh. Feeling a little discouraged and I am sick of her suffering. Again, it is out of my hands and I need to accept it and have faith. Easier said than done BUT it has gotten us this far so I need to trust.
Please keep her in your prayers. 

Friday, July 4, 2014

Day +14 to Day +18

It has been quite the rollercoaster. I really thought that Taleah would engraft by day 15 or 16. I feel like the doctors thought so too… she had such a high cell dose and it was from an infant… boy have we proved them wrong. 

Tait and Sloan have showed their support this week. We were hoping it would bring good luck. 

She has been up and down and it has been painful to watch and be a part of. She has some serious moods and I am really struggling with it. She has some happy moments but she treats most people like crap. I try not to let her get away with a lot but it is really hard. I am not sure where to draw the line. 

She had a WBC of 0.1 from day 13-15. It went up to 0.2 on Day 16 and then stayed there on Day 17. 

Day 18 showed a WBC of 0.5 and an ANC of 100. That is a big improvement and I am hoping that it will continue to rise. They said things can fluctuate for a few days but I am really praying that we are on the upward climb. We are slowly trying to get her to drink water and start slowly prepping for oral meds. Her morphine pump was also lowered. She will have to be on all oral meds, be eating and drinking a little and off the pain pump before we can go home. 

Scott was able to come up for the part of the week and weekend. We were able to spend part of the holiday as a "normal" family (even though it felt wrong without Taleah). I hadn't been with Slade for 2 1/2 weeks and it was so great to be able to take him to do something fun. It was a fun filled day!

I hated going there without her but needed Slade to feel normal. We continued on with the night time festivities and had a lot of fun. But again, it just felt off without her. I couldn't help but worry and think about her most of the time. Even though she hasn't been liking me for the past couple of days, I still missed her. She spent the day with aunt grammy and played and played. She spent the evening with Tabes and crafted away. I felt better leaving her with people that she loves and adores. 

I think she is taking her frustrations out on me and that is ok. I am pretty sure she is over all of this and just wants to feel noromal. I don't blame her but I know we have a long way to go.

It is so hard to explain the emotions that you experience during a trial like this. It is hard to watch life go on as normal for everyone else. I love seeing others having a good time, but sometimes it makes me miss the life we used to have. However, I hate when people don't want to talk to me about the great things happening in their lives because they don't want to make me feel bad. I know all of the other cancer moms understad how I feel. It's hard to put into words. Mostly, you just want to feel as normal as possible amongst all that is happening. And it is difficult for someone to be "normal" to us for fear of saying something wrong when we are in such a sensitve state. I guess it basically goes back to wanting things to be how they used to be… and that will never happen. This entire cancer journey has changed me, it has changed us and we will be forever a part of this cancer world. We have learned so much and grown a lot and I know there are things that I would have never learned any other way. It's a crazy ride, but I am grateful for the people that are taking it with us. We wouldn't survive any other way!

Sunday, June 29, 2014

Day +12-+13

Suzie (the doll) has had many procedures done. When Taleah feels well enough, it is the one thing that she has wanted to do. It is interesting to hear her talk and watch her "help Suzie". It gives me a little insight on how she feels.

She has been sleeping in until 11 or 12. She usually takes a small nap around 7 and then we are up until 11:30-12 every night. It seems to be when she feels the best.. after the bath and I feel bad making her sleep when she feels good enough to play. Ha. Totally against my rules!! I will say that I enjoy our little talks, prayers and songs before bed. Her prayers are very sweet and sincere and often times make me want to cry. I am usually up 5-6 time throughout the night, silencing alarms, changing her pull-ups (we have regressed in that area) and calling in the nurses in. Now that she is on oxygen, I am constantly making sure it is right by here so she doesn't drop into the 80's again. The vitals, weigh in and rounds with docs start at about 7am, but she usually sleeps through it all. It is slightly draining but worth it. You would think that I would get bored in the room all day, but somehow it is extremely busy and exhausting.
She has been throwing up a lot over the last 2 days and it may have to do with the fact that we eliminated Ativan so I think we will be adding that back in. I just hate the way it makes her act but I think that will be better than throwing up a lot. The oxygen is being used most of the day, we are trying the Lasix twice a day to help with high blood pressure and swelling. The suction has been extremely helpful with the thick mucous in her throat and she has been swallowing the pill much easier . 

Her WBC is still 0.1. We have made no progress on the labs that are drawn every morning. It is staying the same which is better than it getting worse. I was hoping that we would have a faster than normal engraftment, but it looks like we might be lucky to have the average which is day +19. And then there are a bunch of other things to worry and wait for. One thing at a time, right?!
I was able to attend church at PCMC today. Let's be sure and mention that it was 30 minutes long and full of good stuff! (my kind of church.. is that bad to say??... oh and I went in my sweats) It was hard to hold it together (surprise). The spirit there was very strong. I wish I could say that I got a feeling that everything is going to be perfect and painless, but I didn't. BUT I did feel a sense of peace and love. I felt God's love for every person there. It is very hard to describe the different emotions I felt but I do know that I felt an overwhelming amount of love.
I also attended my nephew's baptism. It was great to be surrounded by family, but I couldn't help but long for my little family to be together again. I wished that Taleah could have been there singing the musical number with her cousins, and wished that Slade could play with his buddy Jett and wished that I didn't have to keep the babies away from the little kids. The night was not about me and my family or what I was wishing for... and there were so many great things that happened there tonight. I am just an emotional rollercoaster and those were all things I felt while there.
On the bright side, it is 12:30am and Taleah is happy and acting like herself!! We got to facetime Slade and the two of them were acting like they usually do (saying, "goodnight corndog" and coming up with one million things to say to each other). I was able to spend extra time with the babies and talk to Scott on the phone while I was driving (which is more than I usually can when I am here). Focusing on the positive is all we can do at this point. It is not always the easiest but probably the healthiest thing to do.
Hoping and praying that things will move along quickly and Taleah can get healthy. I am aching for a "normal life" and a happy one for Taleah. She continues to ask about all of the things she can do when she is better. Disneyland is one of them. Not to wish away time, but I am ready for it to be the fall/winter and know that Taleah is 100% donor (Tait). I am getting ahead of myself.
Patience is key. Rely on Miracles.

Friday, June 27, 2014

Day +8 to +11

Day 8 was a hard one. She had a hard time keeping anything down. We couldn't figure out how to keep her comfortable. I think part of the problem was the fact that she was in a lot of pain and her body was reacting by throwing up. It was so sad. She was crafting with Susan and would stop to throw up and then continue on. She wanted to play so bad but it was a challenge. It's really too bad that she doesn't like to watch movies because she could easily do that in bed without exerting too much energy. She slept almost the entire day because we added in Ativan for the nausea. However, due to the amount of sleep during the day we were up until 1:00am. I didn't want to make her go to bed because she was having such a "good time".
Day 9 was a lot better. The energy was much better but she was quite emotional. It is hard for me to discipline the emotion she is showing. It is quite a rollercoaster for her and I feel bad for the people she is taking it out on. I am trying to be patient but I think the lack of sleep is getting the best of me. Cami was also able to stop by for a minute and Taleah loved it. Even though she is not herself, she enjoyed it more than most people understand.
Day 10 was a play date with Cami. Taleah was very excited! Every time she woke up in the middle of the night, she continued to ask me how much longer until she could see Cami. I think the fact that Cami understands and has been through it, means a lot to Taleah. I don't fully understand so I think it is very therapeutic for her to have someone to relate to. Even at 5 years old.
Taleah has a doll that she is able to do procedures on. She decided that she needed a bone marrow transplant as well and she wanted to wait for Cami to help her.

 Despite the way she felt, she was still able to have a good time and didn't want them to leave. Cami was a great sport because she is 3 years older but is still able to make Taleah feel special. We played some tricks, painted and had some fun.
Cami's (and Chelsea) compassion and kindness means more than she will ever know.
Slade was sick the week of transplant. I haven't seen him for SO long and I miss him like crazy. As if only seeing him for an hour day was bad enough... now I haven't seen him at all for 12 days. He is being well taken care of and a little spoiled. I have to keep him away for a bit longer. And even though it kills me, it is better to keep him from the twins and Taleah to prevent horrible things from happening.
Day 11 has been rough. She slept until 12, woke up for a bit and experienced some pain. She slept again from 1:30-3:30. We have put oxygen by her because she is having a hard time keeping her O2 saturation up. I guess this is expected but it is hard to watch her sleep and need assistance to breathe adequately. She is SO swollen and puffy. Her eyelashes have fallen out this time and she just looks so sick. I kept hearing that 11 days out was hard and I can now confirm that is totally is. She has slept most of the day (fit in time to do crafts with Susan) and complained of feeling crappy. One of her lines has a clot and we are working to get rid of that to prevent further complications. Her temp is also reading a little higher than usual, but not a fever.
It has been wonderful to have family care for the twins so that I can continue to nurse them. It has also been wonderful for Taleah. She usually lights up when they come in the room. It's beneficial for all of us. I know it is a major sacrifice for our families and we appreciate it SO much. I feel like I can kind of be a mom to these munchkins.
These babies love her and she loves them. I am sure some of these tender moments are some that we will cherish forever.

Her WBC went up to 0.2 on Day 10 and then back down to 0.1 on Day 11. We were hoping that it was a good sign but now I am not sure. I wait for those labs every morning and pray that something is happening. Something good.
We will keep moving forward and hope for some miracles. She is working so hard and I am hoping that it will pay off.

Monday, June 23, 2014

Day +5 to +7

I had been feeling "sorry" for myself that I couldn't be with all of my kiddos. Taleah seemed to be getting worse and I figured I would be at this hospital for the next month or so without seeing the rest of my family. Of course I want to be here for Taleah, but I need my other kids too. Constant battle right?!
Treena saved the day by coming to the hospital ALL day on Saturday while I attended a wedding. Taleah actually didn't want me to come back. She cried when I walked in the door. The fact that she was playing with Treena all day and not laying in bed and staring into space made me so happy.
And I got to spend time with these 2 babes all day. If only Slade had been in SLC... but I'll take what I can get.
Day +6 and +7 were up and down. She has suction available because it is difficult to swallow her own spit. Swallowing the 1 pill morning and night is torture. She usually ends up grabbing her ears (referred pain) and then throwing up thick secretions/blood (TMI ?). She is hooked up to a lot of pumps and meds are CONSTANTLY running. The pain pump has helped to stay on top of the pain but it seems to have its own side effects. Her mood swings are definitely there and at times I have had to get after her for a poor attitude. It is hard because it is way crappy what she is going through, but I have to be careful what I let her get away with. It is fairly difficult to know what is the right thing to do. I basically HATE when she treats other people like crap, but then again she has to feel HORRIBLE! Ugh this mom business is hard. Especially the cancer mom business. Can you tell that this is a struggle for me??
Susan (art specialist) has been more than a lifesaver for Taleah. Well, for all of us actually. She was the first person to make Taleah smile since the relapse and continues to make her smile. They plan days to wear matching camo pants, make matching necklaces, and just have a good time together. She will spend over an hour with Taleah and it really lifts her spirits. I don't think she knows what an impact she has had on us throughout this relapse.

Taleah will be happy with me for a bit and then the next second she is angry with me for something. It is really hard to keep her happy and I am not sure if she is just taking out her frustrations on me, but all I want to do is be there for her. I have to make her do the hard things, but I also try and do a lot of things to make her more comfortable and happy while she is here. I start to get frustrated and a little short with her and then I feel bad about it. Again, another balance that I am struggling with. 
Taleah's labs look like they are supposed to. She has no immune system and switching off between needing blood and platelet transfusions. I am pretty sure that her entire inside lining is covered with sores. Her lips are also starting to peel and crack. She is retaining some extra fluid so she is receiving a medication to help release some of the fluid. However, she is still pretty puffy and swollen. I keep hearing that it is going to continue to get worse. Talk about anxiety. Only time will tell.
We were facetimeing (is that a word?) Slade and Scott tonight and I was reminded of the love I have for the both of them. When Slade started crying and asked me when I was coming home, it was all I could do to keep from breaking down. I want to be home so bad. I wish that this was all a dream and had never happened. I can't imagine how difficult it must be for him to understand why I am never there for him anymore. We are living out of suitcases, in a hospital, at someone else's house and he is being juggled with many different people (that love him). I had to remind him that I would see him in SLC soon and he just kept asking me why. I need to keep reminding myself that we are learning from this. We are growing and something good has got to come of it.
I don't want this blog to be only sad and negative. BUT I do want it to be real. This is childhood cancer and we are not the only ones suffering from it. There are so many kids/families and watching them all battle is almost more than I can handle. I can't wait until I am in a place where I can give back, bring awareness and mostly help those that need it.
Thank you for all of the support. I am constantly receiving texts, emails and phone calls and it really means a lot.
It makes the battle that much easier.
Thank you!
I have learned a lot

Saturday, June 21, 2014


The days leading up to the transplant were quite eventful. Taleah felt great and only wanted to party. I kept thinking that this might possibly not be too bad...
We had dance parties, visits from princesses, tricks on nurses, photoshoots and so much more. I think she was actually happy to be there. The only downside was her "diet". She has a very restricted diet and the food has to be prepared a certain way.

The night before the transplant was extremely nerve wracking. I almost made myself sick. I kept Tait at the hospital with me because I had to check in at 5:45am. I just wanted everything to go right. And then your mind wanders... what if the person taking Tait's marrow gets in a car accident, what if the surgeon messes up, what if there isn't enough  marrow... so many things.
I kept thinking that Tait had no idea what was coming, but I am pretty sure she did. She was so good and handled all of the pre-op stuff well. When the anesthesiologist took her back to the OR, she went happily and I wanted to cry. Such a big moment was about to happen and it needed to go smoothly.
The waiting was torture. It seemed like forever.
She recovered pretty well but was pretty sad. She wouldn't smile, nurse and pretty much slept.
Tait recovered for about 2 hours and then they let us go back upstairs while they prepared the bone marrow for the transplant. It was pretty amazing that the second we walked into the room, Tait looked right at Taleah and smiled. It was almost like she was saying, "I did it!" They laid in the pack and play together and the moment that I captured on camera was one that I will cherish forever. They looked right at each other, Tait grabbed Taleah's face and they just hugged. It was beyond special.
Tait slept most of the day. We waited for the estimated time of arrival for that special gold. Taleah requested that her face/head be painted. Susan (Taleah absolutely adores her) saved the day and worked really hard to make it happen and it looked great!!
The crew showed up. We sang a song and celebrated this wonderful miracle. She was a little overwhelmed but tried to soak it all in. 
We had preliminary results on the bone marrow. They ended up taking the max amount from Tait which was 150 mls of bone marrow. They want the CD-34 cells to be in a range of 2-5 million to have successful results (it would take a day to get the exact count). They were thinking that Tait would be about 2 million and anything over 1 million would not require the use of the cord. It was a little difficult because of the different blood type and it took a while to remove as many red cells as possible without removing too many white cells that she will need. The BMT team was worried about having too many red cells for the transplant so they decided to divide it into 2 bags and pre-medicate before each. Apparently, that is not the norm so it freaked me out a little. It took about 7 hours to infuse it all through her line and had to be done SO carefully!!
At the end of the first bag, Dr. Pulsipher came in and informed us that the actual CD-34 cells for Tait's marrow was 10.6 million! We were beyond thrilled with that rich marrow. Way to go Tait!
Taleah still felt pretty great and even so the next morning. The fam was together for a quick minute and probably will not be for quite some time.


Now we wait. We endure things that I hear horror stories about. We wait for her body to accept Tait's marrow. It could take 15-40 days... no one knows. We will know when her ANC reaches 500 for 2 consecutive days. She has no immune system and is at risk to catch pretty much anything. I have limited visitors and trying to be extra clean. 
Day 0 is the transplant and for Day 1 & 2 she has felt pretty good. Still wanting to play, joke with the nurses and have a great time. I loved every minute of it!!
Day 3 & 4
It is getting harder. She is struggling. She has mouth sores, in her throat and the lining of her insides. It seems extremely painful. She has stopped eating and drinking so she is being fed intravenously. She doesn't even want to play in her rainbow playroom. We have upped the pain meds and trying to stay on top of the nausea. The throwing up was a little out of hand on day 3 so I think we have a system figured out to help that issue. I sat and caught her throw up and watched her struggle to catch a breath and I wanted to cry. It seems like she kind of shuts down when she starts feeling crappy. She won't look at me or really even talk to me. She just stares into space and cries or whines. It makes me wonder why she has to go through this. I wish so bad that I could take it all away. When she is doubled over in pain, I want to hold her and switch places. It is really hard to watch your child suffer (as many people experience in so many other ways).
All while Taleah is struggling, Tait was still sore and needing some extra attention. Also, I sent Slade back to STG and he ended up fevering as well. It more than broke my heart that I could not be there for Taleah, Tait and Slade at the same time. I HATED that I couldn't be a mommy to all of them. I hated that Slade possibly didn't even want me because he has gotten use to the fact that mommy won't be there for him. It sucks pretty bad when you feel like you can't do your job and you feel like your 3 yr old is slowly slipping away from you.
 It's a funny thing as a mom of young children... it's like you can never have a break and alone time sounds like heaven... yet I want them to need me because I need them.
I have also met a lot of moms that are pretty amazing. They all have their own story and it really is heart warming and heart wrenching all at the same time. I can't begin to explain the strength I gain from listening to them as well as the anguish I feel for them. This cancer world is something else.
I keep hearing that things will get worse before they get better. Makes me physically sick to think about it. However, it is expected and we will do our best to keep her comfortable. We will get through this. She is so tough and such a fighter. Praying for a speedy engraftment and very few bumps along the way.
*Rely on Miracles*