Monday, September 15, 2014

Day 79-91

Well, to say that we are anxious to hear the results would be an understatement. The waiting game is intense. They told us 5-7 days. We have heard some of the preliminary results which included the great news of clean/cancer free bone marrow and cellularity of 90% (active cells in the bone marrow-average at this point is 30%). That was really great to hear, but the big tests take longer and will determine our departure. More importantly than our departure, it determines the success of the bone marrow transplant. The hard work, sweat and tears of the last 6 months. Kind of a big deal!

Taleah has been feeling pretty great. I feel like the fatigue has improved a lot and she is really hard to keep entertained. She is constantly wanting to help with the twins and is pretty much bored of me and everything about our life right now.
Sadly, cancer has made her think that she has to have someone with her all of the time and be pretty much entertained 24/7. That is not real life, but in her mind it is because it has been that way over the last 6 months. Slade has experienced similar things because he is constantly passed around to be cared for and I think everyone feels bad for his "not normal" life (I totally do).... so he gets a way with a little more... or just gets all of the attention.... either way he hasn't had to portray much patience, sharing, entertaining himself.
I am documenting this because we are experiencing this firsthand as Scott brought Slade up to surprise us for this (hopefully) last week up here. Taleah had been asking for Slade and I had been missing them like crazy. It has been great to be together, but we are realizing that they haven't had to share with each other. Schedules are a little messed up. We are just not our "normal selves", which is understandable. And things just need some work, routine and normalcy.
It makes us even more anxious to be home as a family, practice patience, routines, love, ect. It has been so long since we have had our family under one roof. I realize that I sound really desperate, but I am. I have just about had it with all of this and want to have my little family home. I want Taleah to be able to put this all behind her and move on with her life. She is SO ready.
The endless amounts of people that are bending over backwards for us is so humbling. I can't even begin to name them all for fear of forgetting someone. I receive text messages all of the time of people letting us know of special prayers and fasts on behalf of Taleah and our family. It means the world and I seriously want to cry almost every time I read one.
Wednesday can't come soon enough.
Praying for good news. 

Thursday, September 4, 2014

Day 66-78

Time seems to moving faster and it probably has to do with the fact that she is feeling a little bit better. She has been such a good help with the twins and constantly asking what she can to do help. 



I was able to take a 48 hour trip to Saint George to see Scott and Slade because it had been a few weeks. It is hard not being together and not being "home". It was much needed. We have sweet friends that bought me a buddy pass to St. George so I was able to fly with one of the twins (I'm not brave enough to take both). Tait is a little less maintenance so she won the ticket home (sounds horrible but it's true).


Scott and Slade were able to drive us back up to SLC and spend some time as a family. That was the most needed and came in perfect timing. Honestly, when Taleah isn't feeling well she only handles Slade in small doses. This time she was feeling so much better and they got along so well. Such a simple thing, but it made me tear up every time I saw them playing, hugging or any kind of interaction. Cancer will do that to ya!



We have been "apart" for almost 6 months. It has been a giant challenge on top of cancer, stress, financials, ect. To say that it's been easy, we get along perfectly and love the lessons we are learning about marriage and life.... would not be true. To say that we have grown, learned communication, built a stronger foundation for this family would be accurate. I have learned that I am pretty lucky to have a husband that loves me, loves our kids and wants to learn and grow from this. I have learned to do a lot without him, but when he is here I realize how much I really need him and want him all of the time. 
 The family time was amazing. I loved every second of it (even the high maintenance twins). Taleah said multiple times, "I like it so much better when our whole family is here". Amen sister. 

I feel like Taleah is almost back to normal. I was able to bring her cheer uniform back up and she was in heaven. She hasn't wanted to dance much and definitely not tumble. When she put the uniform on, it was like it all came back to her! It was hilarious and awesome.  


Taleah had clinic and was determined to climb the stairs instead of ride the elevator. This is four flights of stairs. I didn't think she could do it. You would have to know that this is only our second visit without the stroller. A lot of our appointments have consisted of the stroller only and carrying her to the bathroom, ect. This was huge and I got teary eyed watching her climb those stairs with determination. (I am normally not super emotional but this dang cancer may have changed me a bit)

It was seriously a reunion at clinic that day. We saw so many friends, visited a lot and felt really comfortable being there. The nurses even brought out pics from her first Halloween as a cancer patient there (almost 3 years ago). Kind of odd how that happens and you end up knowing more people than not. Odd... but great!

Her line is working and holding strong. We have her bone marrow aspiration on September 10. We will not have the specific, most important results until the following week. It will be a long, painful week of waiting but nothing I can do about that. Her labs are looking good so far. Her marrow appears to be growing at a steady rate. IF everything looks good and she is 100% donor then we can come home!! We will still be going up for monthly (possibly bi-weekly) visits, she still won't be able to attend school and we will still be cautious with the immune system but we would be HOME!! I don't want to get our hopes up, but I really hope everything is working and we can be here as a family. This experience has really opened my eyes to what is important and really  matters. Life is a crazy thing but we are ready to live it!
Taleah is a rockstar along with all of the other kids. I wish I could convey the love I have for these kids and what they go through. September is Childhood Cancer Awareness month and I wish Gold was as popular as pink is for breast cancer. I plan to give back  and bring awareness when I have a little more energy and within me. I want to serve people and help others because let's be honest, that is all people have done for me and my family for 3 years. 
Please pray for Taleah and that aspiration next week. 
We feel the love and prayers. 
We really do.

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.
http://www.youtube.com/watch?v=sqVRUChSM9g










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).
http://www.youtube.com/watch?v=ZzDQLq8nXng&list=UUDhfin5GWGN87JUX3al5IRA










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.