Hospital Routine

Just a little update on how Sophia's Chemo appointment went on Wednesday and a little of what we go through and why an appointment can take up to 5hrs or more.
We got to the hospital at 1pm and I got Sophia all checked in at registration. We usually have to wait about 20 minutes before she gets called to go to triage where they take her vitals, height and weight but since she didn't have an appointment to see her doctor they sent her right away to get that all done. We did have to wait about 15 minutes before triage was ready for her but that's pretty normal. Once she was all done at triage we were sent down the hall to where she would get her chemo but we had to check in there first. We then waited about half hour for them to call Sophia in a room where they drew blood from her picc line and once that was done we then had to wait about an hour for them to get results and get the order ready for her to get the chemo. So for that hour we can go wherever in the hospital, which there's plenty to do there, and once the nurses are ready for her they call my cell phone and we head back to the nurses station. So Sophia and I went to have lunch and after we walked to the garden to watch them decorate for Christmas. It's looking so cute out there and I cant wait til its done so Sophia could see it all and we could do a walk through. Sometimes they have this lady who volunteers her time and she reads books, and gives books away, and does crafts for the kids and Sophia seems to like that but she wasn't there that day. Anyways, the nurse finally called me and said Sophia's counts looked great and she would be receiving both chemos (last visit her blood levels were lower than they wanted so she only received one chemo) so we headed back upstairs to the nurses station and waited about another 20 min for the order to be ready so we killed time in a waiting room till they called her in. Finally they called her in a room where they give her the chemo. One of the chemo is a push through, meaning they push it through themselves into her picc line and the other is hooked onto a machine that feeds it slowly into her picc line. After each chemo is done they do a saline flush to clear her line so total it's about an hour to receive both chemos. Once this was done we then waited about 10 min for them to call us into a different room were they would do her dressing change to her picc line which takes about 10-15 minutes depending who does it, this time it took about 20 min because they were teaching a nurse how to do it. I usually don't mind but I really just wanted to be home already. Overall she did well receiving the chemos and with her dressing change. They even gave her a cute pink beanie which she loved and wore it proudly walking out and as we met hubby/daddy (he took the train from work to meet us there) she got to show it off to him :) So in the end we were there about 5 hours and this wasn't including seeing her doctor, actually we usually see a resident first then her doctor which makes it for an even longer visit at the hospital. Hubby, Sophia and I finally hit the road and we got all that lovely holiday traffic but it was nice because Sophia go to nap before we headed over to my moms to celebrate my niece's birthday and hubby and I got to talk the whole way :)
This is just a typical appointment at the hospital that doesn't include the doctor visit and doesn't include any procedures.
Phew! Writing that got me just as tired as going through it. Everyone's prayers are much appreciated as we continue through this "sick season" It really sets Sophia off with treatment when she gets sick which in the end it prolongs the ending of this all.

There's No Place Like Home

It's that time of year where everywhere we look people are sick, yucky coughs, runny noses and sneezes and our little Sophia was one of them. Three weeks ago she came down with a cold and we were scared she would also come down with a fever, which we feared because then we'd have to take her into the hospital. She did pretty well with her cold and had no fever but she had a runny nose and a slight cough that didn't want to go away but as long as she had no fever and we kept her hydrated she was doing well. On the third week of getting over her cold she ended up developing a fever at the end of that week, last week on thursday evening, and by the evening I mean late at night, 10:30pm. I ended up calling the docotor on call to see what I should do because they don't allow her to take any meds like tylenol while going through her chemo treatment, so he advised me what to do and I did and by 1:00am we had to take her to the E.R. at Children's because her fever ended up going too high. So the nice thing about her having Leukemia (because believe it or not we have to look at positive things during this ugly time) is we don't ever have to wait to be seen. They were already waiting for her and took her in right away and started what they had to do. She ended up having an ear infection, we had no idea she had this because she showed no signs of it bothering her at all. They told us she would need to be admitted and they couldn't say when she would stay til, so the plan was to keep her there so they can keep an eye on her and administer more antibiotics throughout the day. We ended up staying 9 hours in the E.R. due to them running tests and running antibiotics in her and boy were we tired. She stayed awake til about 8:00am and finally knocked out for about 4 hours. They took us to her room where she and I slept for about 2 hours and finally the on call doctor came in and said she was being discharged that day because we could just give her the antibiotics at home. We were so happy because there's no place like home :) She's been getting better since then and her cough and runny nose have been disappearing. I forgot to mention that the same day she was admitted she was suppose to have her doctor's appointment/chemo treatment so that ended up getting cancelled because her counts were too low. We were fine with that because Sophia needs to recover and that might have made things worse. We watched her over the weekend because they said she could still get fevers, which she didn't, so she rested up because on Monday (November, 12, 2012) we had to take her back so they could do her chemo treatment. We went to her appointment where she was going to get her picc line dressing change and her 2 chemo treatments. She did really well with her dressing change, no crying at all, but her counts were too low so she only got one of the chemo treatments. Her doctoer didn't want to give her that second dose of chemo since she's still recovering, on top of her conts being low. So her next appointment will be for the day before thanksgiving. She is a little off track with her treatments so hopefully she will be able to get back on the next time we take her. Your prayers are much appreciated while we go through these holiday seasons and people around us are sick. We pray that Sophia doesn't get sick again for a while . . . or ever :)

Appointments and Chemo and PICC lines! Oh My!

So today was a pretty busy day, as every other day seems to be lately. Not only did Sophia have her appointment at the hospital but so did I for baby #2, almost back to back appointments. I am one tired momma right about now!

Sophia has happily completed 2 phases of treatment and is well on her way to recovery. Our prayers are still for no complications along the way as this will set her back and prolong treatment. So far she's responded really well to everything. She began her last phase of treatment today and Lord willing that everything goes well she should finish in 2 years, approx. 22 months left. This last phase is broken down into several phases and right now she started intermaintenance phase 1 which consists of her only going to the hospital every 11 days for 2 months. I'm really happy we don't have to be going every week. So every 11 days we'll be at the hospital where she'll be receiving chemo. The difference this time is the chemo she use to get in the spinal tap (methotrexate) will now be given to her through her picc line, this may cause her to get mouth sores where getting it through the spinal tap wouldn't do that to her and it may also not happen, so we are praying this doesn't happen as I am sure it is pretty painful but every 11 days her chemo dosage will go up making the chances of her getting those sores greater. I believe once this phase is over (2 months) she should get her picc line out and then start her next phase which she would only be going in once a month and getting chemo through an IV line. This will hapen if all goes well with her picc line, or else she'd have to get a port which is an internal catheter. Her doctor likes to work with picc lines and I am glad becasue that means for a port to go internally she'd have to have a surgery to place it in and a seperate surgery for it to come out which would leave her with a scar but if it has to happen then it happens but I really dont mind the picc line and she doesn't either. She helps me clean it everyday and flush it. She's got this whole routine down and is becoming an expert at it :) I am also happy that she will not be on any new meds as of now so that makes the daily routine seem less then it used to be. I can't believe how far we've come, it seems forever right about now but we still got lots to go through. So for now we're on an 11 day hospital cycle and anxiously awaiting baby #2! God is so good, so good!

 

 Love Love Love her sweet little big smile here!

 

 

The New Normal

The new normal is all about our life with Sophia and how things are going back to normal; a new normal. I finally feel like this new routine we have for Sophia of doctor visits, clinic visits, procedures, chemo, picc line flushes, medicine taking, unplanned ER visit, and hair loss shock is all starting to feel like this is how life has always been. I can't forget to mention all the doctor visits I have of my own for baby #2, you should see my calander; can you say Bbuussyy. It's a little overwhelming if you think about it as a whole but once broken down into times, days, and help from family it's not that bad, it's a lot to deal with at times especially when a doctors visit that's suppose to be 5 hours turns into 10 hours :( ugh 5 hours is already a lot but overall it's not that bad. We feel like her hair is coming back little by little and the weight is shedding off pretty fast too although we are now practically begging her to eat instead of trying to not let her eat so much. What a difference a week makes and new meds. She is now walking on her own again, she's still not all running around but she sure tries. She went from not walking for 3 weeks to army crawling around the house to holding onto someone to walk and now little miss independant is all on her own again. She is one determined little girl. It's so cute to see her with her cousin, who motivate her so much, running around the house as she tries to catch up, she loves them and I love that they have such a big part in her life. I feel like I'm getting my little girl back and then some. I feel like she's even more silly then before and her talking has gotten so much clearer. Her words sound like my words and everything her dad and I say shes gotta repeat it too. Before cancer life was always changing and we were always adjusting to whatever life threw our way, the good and the bad, so when cancer was thrown our way I thought we would never adjust but God is proving Himself more and more to us that things are going to be okay and He has put a peace in our hearts where we are comfortable with life and everthing it has to offer for now. We are adjusted to this new life He has laid before us. Now when baby #2 comes that might be a new story but I'm sure with time we will have an all new normal, a new life with 4, and a new road to go down. As always we will continue to trust God every step of the way and We are still so thankful for the continued prayers and support from all over :)

My sleeping Beauty!

 

Trying to ride her cousins bike. 

 

A sweet smile :)

 and off she goes!