Saturday, June 4, 2011

For those of you who have signed up for Team Skyler for the CureSearch walk or made donations, THANK YOU!  I am so grateful for your support.  This walk hits so close to home and is something I am so passionate about.  I am not one to ask for money or help but to help find treatments with less harsh and toxic side effects and to ultimately find a cure I will do just about anything.  For those who have signed up already I am making shirts for our team.  If you would like one (they are free) please email me with your size at I will bring them the morning of the walk.  If you would like them sooner please let me know and I will try to get them to you. 

Now for a Skyler update:  He is doing ok considering all the chemo that has been pumped into his little body these last couple of months.  He still has mouth sores, he has been vomiting quite a bit lately which has led to a drop in his weight and his legs hurt really bad.  At times be can barely walk, but for the most part his legs have gotten stronger and yesterday he "jumped"  His feet really didnt come off the floor but for him this is amazing.  Im so proud of him and he is so proud of himself.  I love the little look on his face when he does something new like this.  He really is proud of himself and loves to show people his new tricks. 

Clinic was pretty hectic this week.  He was supposed to go for his LAST chemo in this phase and ended up needing platelets too.  They were nine.  We were in the midst of switching insurances which led to so much confusion with our home health company and left Skyler without all of his IV frustrating.  We were left with the only option of admitting him to the floor to get his meds. but were finally able to get everything straightened out at the last second.  He ended up having to get all his antibiotics done at clinic which took five hours.  We were the last to leave, clinic was already locked up with the lights out when we were done.  He got what he needed though and we escaped an overnighter, thank goodness.  I cant believe we are finally done with this delayed intensification phase.  I am so happy right now.  This means we have one more phase left until we can get some sort of normalcy in our lives again.  Skyler is still neutropenic (ANC is 0)  On Monday they will come draw labs and see if he makes counts to start the next phase of high dose methotrexate.  If he doesnt they will come back on Wed to check again.  Our plan right now is to come in next Thursday to clinic, get a CT scan and then get admitted, but this all depends on how fast his counts recover.  He will be in the hospital because they are giving him extremely high doses of this chemo and he needs to be monitored.  The number of days just depends on how fast his body can rid the chemo once it has done its job.  We have four rounds of this lasting two months.  Im definitely NOT looking forward to this phase of treatment, but this will increase his chance of survival 10%  Because he cannot take steroids due to his fungal infection that decreases his chance of survival by 10% so another 10% added on is something we NEED.

 Good ol platelets and antibiotics.  We are getting used to seeing that yellow bag again.

This is clinic after they closed up.  We were still there, finally getting his chemo at this point.

We were able to leave the door open once we were the only ones there.  This is his silly face!

A push of chemo and we were finally able to go home. 

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