Mother's Day 2015

Mother's Day seemed fitting to update on Taleah and life back home.

There is no way to catch up on everything that has happened in the last 7 months that we have been home. It has been more than wonderful in so many ways. She was able to start back in cheer, dance and gymnastics in November. She started kindergarten in the middle of March. Taleah has LOVED being a part of normal life stuff. She has caught every sickness there is (it feels that way), but we knew that was expected. That doesn't  mean that I didn't freak out every time she had a fever.. I did and much more.. has to be some sort of PTSD or something. She has the attitude back in full force and amazes me with the strength she has. 

It hasn't all been easy... like the kids in stores that ask if she is a boy because of her hair. Or when kids she knows treat her as if she is contagious (they would whisper or just ask me) and keep their distance. Many things that I would have to help her understand and explain that they are kids and are either curious or just don't know any better. I will say that the good has outweighed the bad by one million though!

Medically... things have been pretty good. Not perfect... but good. We have had a few scares with labs, tests, ect. It was so heart-wrenching in the moment that I could barely talk about it and for some reason I couldn't write about it.

Basically, she has labs and a visit with the Bone Marrow Team every 4 weeks. We tested the her bone marrow before day 100 and her chimerism was at 100% donor. I can't remember why they decided to test the blood chimerism, but they did and I got a call the day after Christmas. They told me that they didn't want to ruin Christmas but her labs were concerning. Her blood chimerism was at 85% (you want 100%) and obviously we don't want that 15% of her blood because her blood makes cancer cells. I was FREAKING out and they wanted us up there in the next few days to do another bone marrow aspiration to see where she was at. Typically, the bone marrow (where the blood is made) is a little lower than the blood. I was in a panic because this would mean that her bone marrow is making a comeback and killing of Tait's. I was sick, heartbroken and could hardly function. We made it up there without letting her know what was happening and I was basically told not to panic until we received the results (yeah right). I talked to many cancer moms and not many had this similar experience. The results were in and they were a little stumped but optimistic. Her bone marrow was still 100% donor. Her blood was 85% and breaking that down even more was due to her T cells (the ones that fight cancer). She still had 15% of her own T cells circulating in her blood. The plan was to test every 2-4 weeks and see if it was rising or declining. If it were declining, we would worry because her T cells obviously sucked at fighting cancer. IF the cancer were to come back she would only have 85% of the army to fight it off. I was still super nervous but felt a little better that her bone marrow was still in a good place. The explanation for the marrow to be 100% but not the blood was due to some of the cells in the blood never being killed off before the transplant. Tait's T cells are just taking a little time to kill off Taleah's T cells.

 Long story short, we did lots of tests and trips to SLC but as of last week her T cells are up to 96%. Yay! That is a big step and we feel really blessed and we need it to keep rising. 

We are close the the one year post transplant so we will be doing another bone marrow aspiration and lots of other testing within the next 6 weeks. I am already starting to feel a little anxious about it but I need to remember that God has a plan for us. 

Honestly, today (Mother's Day) didn't go exactly how I thought I was wishing it would. Scott ended up having to work all day, the kids fought, tantrums galore, crying, time outs, extra amount of poopy diapers, disobedient moments, ect. BUT there were also Mother's Day songs, hugs, kisses, homemade gifts, yummy food, time with family, a hard working husband, and cute funny moments. It was a perfect reminder of the Mother's Day I wished for last year as we were preparing for the transplant... a day with all of my happy, healthy kids under one roof. That was just what I had and I am SO grateful. Life can be chaotic and crazy but I feel very blessed to have spent the day with my 4 littles. 

I had to write about it, update our friends and family and ask for good vibes and prayer on her behalf over the next little bit. Staying positive and trying to eliminate the anxiety.

Happy Mother's Day to all of the wonderful mothers out there.  

Home

The weekend of waiting was slightly torture. I just wanted to hear that she was 100% donor and all would be well. We tried to make the most of our week before we would hear the results .Scott and Slade surprised us and spent Sun- Wed with us anxiously awaiting the news. We visited Gardner Village to celebrate the good news (so far) with the Schanz family. We adore them and are forever grateful to them. Taleah was happy and I tried to soak up the time as a family. I mean hearing that she was technically cancer free is kind of a big deal.

I couldn't stand the waiting and I knew there was a chance that they would have the results Tuesday night, which was the day before our big appointment. I was "that mom" and called begging for results. They sent me to the nurse practioner and she didn't know yet. She pulled up the results and repeated the information that we had already heard and my heart was pounding. She then informed me that she was 100% donor and all of the tests looked great. Tears filled my eyes, it felt like my heart stopped beating and I didn't even know what to say. The big moment we had been waiting for. Words cannot describe the emotions running through my body at that point. 

We met with the docs the next day and we were cleared to go home anytime. We were on Day 93 and being sent home. I couldn't believe it. Of course we had a ton of packing to do and knew that it wouldn't happen until the next day. I was ready to stay up all night so we could head home the next morning. 

Let's not forget the trouble we were having with her line. It was falling out... so what a better way to the end the day then letting it "fall out" at clinic. I will say it was traumatic but we got it done and avoided a trip to the OR. Yay!

My mom mentioned that we needed to wait until 4pm to pull into town. So we stopped in Provo to see Tavia and have lunch. She then informed me that I needed to be pulling in at a certain point. I didn't know why and there was no way that we would be home at that time. She said she would figure it out. I had no idea what that meant. 

Driving into our neighborhood, lined with people we love and decorations galore.... it was surreal. I was low on sleep, excited, anxious and then felt an enormous amount of love. The pictures don't do it justice. Saint George is amazing. The people are amazing. I will never know how many people helped, how many people donated money, and all of the work that went into this wonderful homecoming. But I do know it as amazing and we all loved it. 

The basement and the playroom is another story. We had started the process before she relapsed.We knew we wanted a playroom, but now a playroom would mean that much more. There were SO many people that spent countless hours, money, time and their talents to make the basement something great to come home to. It isn't all the way finished, but pretty dang close. And that playroom is a dream. The kids love it. I love it. I can't believe all that happened in the months we were gone. I wish we could adequately thank the people that helped. Again, we are so grateful!!

We had a great celebration in our favorite place... Lake Powell. We spent time with family and friends and LOVED every second. Taleah was in heaven.

We even made a special dance video....

http://www.youtube.com/watch?v=0_BtzImj62k

The plan....

We will visit PCMC every 4 weeks. We still have to visit the hospital every time she has a fever (it's already happened) for a CBC, cultures and check up. It still freaks me out and my head automatically goes to the worst place possible. She cannot go to school because she isn't immunized anymore. It is comparable to a newborn immune system. We can't do immunizations for a year. We need to stay away from sick people but she can start extra curricular activities (but of course no sick people).

 I want to enjoy life and live like it will last forever. However, you never know and that about kills me. I try not to let it get to my head, but it does. Fear is no way to live so we will do our best. 

We are just so happy to be home and under one roof. It feels like a dream. 

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. 

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.

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.

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)






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)!

 

 

 

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. 

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.