Friday, January 27, 2012

Great Day!!

Jaylie is doing great and feeling well. Ive been meaning to post for a while now, it's been a busy week though. We got home from the hospital on Saturday after being there since Monday. It was our longest hospital trip during treatment. Her brain surgery hospital stay was the only one longer. We just feel soooo blessed that we only had one fever stay and that it was less than a week. When your in there it feels so long and it was so hard being away from the kids, but we are thankful it wasn't worse and that she didn't have to be admitted on any of the other rounds. She is still not eating hardly anything. Hopefully it will pick up soon, it has gotten a little better, but not much. Definitely the worst and longest it's been for her not eating. She is getting too skinny, but will gain weight fast I'm sure. It's been a struggle getting her to take her meds the last few weeks. Thankfully she will be able to stop one of them soon. She had an appointment on Thursday at the clinic and her labs were good. Her counts were low but not low enough for any transfusions. Her body is on its way up! We still have to be careful with her and cautious of germs etc. They said for 6 months to a year after finishing treatment their immune systems are compromised. Not near as bad as they are during treatment but it's not as good as other kids. She will be fine to go to school and church again but if there are sick kids or bad stuff that has been going around we will prob keep her home:) Her MRI is still not scheduled, they should be calling me on Monday hopefully for that. I guess they are booked up for kids that need anesthesia, so it might not be till the end of February till she gets it. We have so many appointments for different things this month so we are going to have Jaylie start school in March I think. She is quite excited! Kip and I had an appointment yesterday with the neurologic psychologists at the Live Strong clinic. At this clinic they take care of all the cancer patients who are done with treatments. Its right next door to the blood and cancer clinic which is great. They didn't want Jaylie there so it was just Kip and I. They just asked a bunch of questions about her and will assess her in the next couple weeks. It will be two different appointments that are 2 1/2 hours each. They will talk with her, do iq testing, test her processing speed, watch her do puzzles and school work etc. They said its usually pretty fun for the kids. We can't go back there with her, but I think she will do great. They will do this same testing with her every year and compare the results from the precious ones to see if she has late effects etc. We will use their report for school and if in the future she needs special help they will have these tests to base it off of and see what she needs. So it's a good thing to be doing it. I thought it was mainly just radiation kids who have late effects but they said about 60% of just chemo patients (no radiation) have some effects to some degree. It's just much higher for radiation kids. Every kid is different and they can't predict anything. It's hard not knowing what the future holds. Kip and I are just try not to think of what could be with her, we are just thinking the best and having faith that she will come out of this without too many effects. We know with God all things are possible, so we know that He can make her not have any but if it's His will that she does have some then we will make the best of it and will know its in the plan for her. Anyways, I could go on forever about side effects from radiation. I hate radiation more than anything ever. One of these days I will explain a little better about it and the effects. But for now we just try not to dwell on it and try our very best to have faith and hope that the cancer will never come back and that she have the least amount of late effects as possible.

Anyways, today was the best day!! Jaylie has been so excited for a few weeks now for today. We had a lunch party with Advocate MD, now called The Doctors Company, who is the company sponsoring Jaylie in her make a wish trip!! We met Scott, one of the Make a Wish workers at this company today and they welcomed us and were so amazing! It was just Jaylie, Kip and I, the little ones stayed with my friend. We had a great time eating lunch, opening presents from them and having cake. They got her favorite food and favorite kind of cake too! She loved the presents, they were so generous! They were so amazing and nice and it was such an honor to meet them. We will forever be thankful for them and all that they are doing for us. We are so grateful for the Make a Wish foundation too, they are amazing. I will post more about our lunch visit and pictures from it soon. It was amazing!! Thank you Advocate MD!!!!! You made my daughters day!!!

Here is a sneak peek photo from today from my cell. She got this darling Minnie mouse that talks and her bow lights up:) Jaylie loves it and has been carrying it around all day. She fell asleep snuggling it tonight.

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  1. Thank God she's getting better! I was getting worried because you haven't post...
    Our prayers are with Jaylie and the rest of the family!

  2. Kajsa- Your daughter is darling! I am so sad that you have to go through all of this. Your family seems so strong and positive. I pray that everything will continue to go well for your sweet family! I am glad you guys are doing Make a Wish. Seriously, best foundation ever. We went on a Disney Cruise with them and my boys loved it. It was a much needed vacation that came at a much needed time. Good luck with everything! I will continue to keep up with your family.
    Heidi (Howland) Jamieson