Monday, February 27, 2012

Our New Normal

I have been needing to post about Jaylie for a while now and am just getting to it. It has been so nice not to have chemo or appointments all the time. We are enjoying our time together as a family and are trying to gradually switch out of our 10 month "crisis" mode to the next stage, "recovery". Life will never be the same as it was a year ago before Jaylie's diagnosis but we are enjoying it. We have been warned by fellow parents and oncologists that the recovery is more difficult than one would think. We still have fears as we tread again in new waters. We are adjusting to another "new normal". It has been nice seeing Jaylie gradually get her strength back and feel better! No more throw up, bone pain, sickness, mouth sores etc.  It is nice adjusting to home life instead of hospital life! Our lives will still contain many unknown turns and hills but we will adjust to those as they come and just enjoy our Jaylie.  We are going to go back to church probably next week (after about 9 months of not going-we played it safe since there are usually lots of germs and sick kids at church) and Jaylie will start Kindergarten after spring break. She is sooo excited!! Kip and I are now too! I still have my worries, but she needs to be there and wants to be there. It will be nice to get into a schedule too. We have been venturing out a little more these last few weeks, but are still cautious about germs and use sanitizer and wash hands a lot. Her immune system will still be lower than normal for a while so we are careful. But it has been SO nice not to have to sanitize my house constantly or wash sheets every day or freak out about her being close to people. We have been able to relax a little, and it feels so good.

Her oncologist has started testing for late effects from her high dose cranial / spinal radiation and chemo treatments. They monitor her hormone levels and other blood levels because the pituitary gland and the thyroid are often damaged during full brain radiation. They also monitor her thinking and learning. Jaylie had psych testing and evaluation over the last couple weeks.  All of the kids that get chemo in the clinic get tested. The radiation and chemo can effect a lot of areas and the way her mind works is a big one.  She will get tested next year around this time too and they will compare the results from that one with this years test to see if there have been changes and if she needs help. They use these tests to see if and how the kids need help in school. I think all brain tumor kids have a 504 plan at school that helps for them to reach their full potential. We have a meeting at Jaylies school with me, her school teacher, the counselor, nurse, and one of the psych doctors, and we will talk about Jaylie's needs and any special needs she has.  Anyways, she went twice for the testing for 2 1/2 hours each time. She loved it! She said it was fun and she got a sticker and a little prize. She did really well, we don't have the full report yet, it usually takes a while, but they called and gave me a quick report.  She tested average or above average in everything. The only thing they found was that she loses attention if something is boring and she stops participating in whatever that boring activity or test is.  We are so blessed she is doing so well and did so well all through surgery and treatments. It really is amazing. Hopefully she will continue to do well and she won't ever need more help than she does now, but it is nice to know that there are programs in place to help if she does end up needing it in the future. The late effects can occur anywhere from 6 months to 5 years after radiation so its kind of a waiting game. We have faith and hope though and know that anything is possible with our Heavenly Father.  If he wants her to have no late effects, we know He can do that and if that is not the plan, we know He will help guide her and us along the way..

Jaylie has an appointment tomorrow to check her blood counts and they are giving her an End of Treatment Party!! She is so excited and we are too! The whole family is going, along with my awesome Mom who went to just about every appointment of Jaylies with me. She is awesome! Anyways, they have little end of treatment parties for the kids when they finish up treatment. She will get a Hello Kitty cake too! After this appointment, she will only go once a month for a nurse visit to put heparin in her port (she has to get this liquid in it at least once a month the whole time her port is still in her body. She will get the port out at the end of the summer probably). And of course she will have an MRI every 3 months still. It will quite a change for us because we are used to going there at least once a week. I know Jaylie will miss her nurses and doctors, but will love meeting new friends at school.  I really can't believe we are done with the treatment phase. I feel like we will never be all the way done, because there will always be the worry of the cancer coming back and having late effects, but she is in a really really good place. To not have any sign of cancer or have effects from surgery or chemo is huge and we are so thankful.

I have been meaning to write a little about her MRI and her audiogram she had a couple weeks ago.  She always loves getting audiograms because she gets to see Liz, the lady who loves cats that always does the testing. Jaylie drew her another picture and she has them all hanging on her wall. I knew that her hearing would probably be worse this time around because she had gotten all her chemo and it gets worse with every dose of chemo. Luckily it was the last round and it won't change much more. Her high frequency hearing has declined quite a bit. She has a lot of loss but its not that big of a deal, the don't even test the high frequencies in normal testing, just in chemo kids. She only had one normal frequency pitch that she lost some hearing on and it was only in one of her ears. She tested normal on that frequency in the other ear. And it was on the highest frequency tested, so it really shouldn't effect her in everyday life, and she probably won't even notice. We are so grateful that it is so minor. We sure do have a lot to be grateful for.

She did so well with her MRI too. They usually have to put an IV in her arm to sedate her but she had gotten her port accessed the day before so we just kept it accessed and they were able to sedate her through that, so she didn't have any pokes or anything. She was super happy about that. It was a long week of waiting for the results, but it seems that Kip and I are always comforted and feel at peace every time we wait for the MRI results. Heavenly Father always knows what we need and helps us during the hard times. We couldn't be happier that the results came back good. There was no sign of any cancer and no suspicsious spots. She has scar tissue where the tumor was but that is normal and everything looked good. We are so thankful. I wish it was all over now, that we didn't have to keep getting scans and wondering or worrying if it will come back or not. We are so happy to be done with this phase, but it won't ever feel like its over. Please continue to keep praying for Jaylie, that the cancer won't ever come back and that she will have little to no side effects from radiation.

There is a little boy Jaxon, around Jaylie's age that lives in San Antonio that has the same diagnosis as Jaylie, sPNET. They were diagnosed weeks apart and he finished up treatment in December. Their diagnosis is so rare, there are not many kids with it, and for them to live in Texas was great. Jaxon's mom and I emailed back and forth a couple times and we found out right before we got Jaylie's MRI results that he had relapsed. They found two new tumors, both the size of the original tumor in his brain. I feel for his parents greatly, that is my worst fear come true, and they are having to deal with it. I just feel sick for them. We always pray for a cure and we know God can do anything. Please keep Jaxon and his family in your prayers. His website is:

I will update again soon with pictures, there are so many I need to add!

1 comment:

  1. I cannot even begin to tell you how happy and excited I am for your family! I know firsthand, that the new normal is a huge accomplishment! It makes you even more grateful for the small things you get to do as a family. And she will do great! You guys deserve it! Congratulations to being off treatment Jaylie!
    Love, Heidi (Howland) Jamieson