Monday, January 25, 2010


We have had a lot of questions about donations. We would like for any donations to be given to the Christus Santa Rosa Children's cancer center and pediatric cancer research. We set up an account at First Commercial Bank in New Braunfels in Rachel's name. We plan on donating all donations to the clinic that she has spent so much time at over the past 2 years. You can mail checks to First Commercial Bank or drop them off. They can be made out to the Rachel Jost Fund. The address is:

First Commercial Bank
1525 S. Seguin Ave.
New Braunfels, TX 78130

or you can mail it to us:
422 Mesa Hill
San Antonio, TX 78258

Thanks so much for any donations made. I know that the money will be put to very good use.

Sunday, January 24, 2010

Final Farewell

We are having a celebration of Rachel's life this Thursday and Friday in New Braunfels. The visitation & rosary will be at Sts. Peter & Paul Thursday night at 5:30 with the rosary starting at 7. The funeral service will be at 2 pm on Friday also at Sts. Peter & Paul. We want this to be a joyful event for Rachel and it would mean a lot to have the support of family and friends present.

If you're traveling from out of town you can call the following number to get discounted airfare and lodging: 1-800-224-4177 the funeral home is Zoeller and they gave us the number 4188 for proof of discount.

Saturday, January 23, 2010

"All Done"

Rachel went to live with Jesus at about 4:40 this morning, free from pain and cancer. Rachel may you finally rest in peace. We can all hear you saying "all done." We love you sweet girl and we all thank God for our short time with you.

Thursday, January 21, 2010

Heaven's Next Angel

Rachel had a ct scan this morning that revealed she has had many more strokes. The damage is extensive and irreversible. The doctors feel operating on her at this time would not help anything. Amy and michael's wish for her was that if she has to go, that she may go peacefully and quickly. Rachels whole family was here to say goodbye to her. Except for Emily who is blissfully unaware at home playing with her cousins. The respirator was removed about an hour and a half ago. And Rachel, in typical Rachel fashion, continues to fight. She is heavily sedated with morphine so she is comfortable. She's just not quite ready to let go! Amy and Michael are taking turns holding her free of most of her tubes. Sometime soon she will slip her little hand into Jesus's hand and be our angel forever. Thanks to everyone for your prayers and support during this difficult time.

Wednesday, January 20, 2010

Just finished meeting with a team of doctors. Rachels current status is that she is intubated and heavily sedated. They tried waking her this morning but it did not go well. After reviewing her ct scan, the neurologist and neurosugeon determined that she is experiencing brainstem pressure. They believe her disease is progressing to the point where it is affecting many parts of her brain. The brainstem controls vital, involuntary functions of the body like breathing, heart regulations, etc. After meeting with the team of doctors, We have decided that this friday, the doctors will put rachels shunt back in and after the surgery, they will take her off the respirator and let her try to wake up and breathe on her own. She may not do that and if she doesn't, it's time to say goodbye. After experiencing what we have the last two weeks, we know what a miracle we have witnessed the last two years. We thank god for that. Continue to pray for all of us, that we can accept gods will. And for Rachel, that she knows only peace and comfort. She may surprise us yet and look at us and say "why are u crying, I need lipstick. And where's my blankey"?

Tuesday, January 19, 2010

The last few days have been the worst roller coaster ride so far! Rachel is still hanging in there but it's been a rough couple of days. She went into surgery first thing this morning after a horrible night in the ICU. There were some complications because the fluid buildup was so bad so the surgeon had to immediately go back into surgery. She had to have one very big headache!! It was more pressure problems but they have been taken care of for now. Her spinal fluid is draining into a bag outside of her body for a few days to see if that helps. She is sedated right now but she is fighting that! They are trying to keep her still because they put her on a breathing tube just for the day. She can breathe on her own but they want her still and resting for a while. Tomorrow we'll know more about her prognosis so we are praying hard that she will wake up and be doing much better with the pressure being off of her brain. She did have a stroke at some point recently, most likely due to the tumor. They originally thought that she was having seizures inside her brain that we weren't seeing but the scans and EEG are not showing any signs of it. This is really good for Rachel because it means that she does have a fighting chance. We have done what we can for now and it's up to Rachel and God as to what she does from here. We are still hopeful and praying for the best. She is showing a lot of signs that she can hear us and she keeps reaching for the tube in her throat to pull it out. I think the doctors just haven't met a strong willed kiddo like Rach and she is, as always, surprising them. They keep having to knock her out with more meds so she's definitely putting up a fight!

Pray pray pray

Rachel is out of surgery. She has had a stroke, and is showing some ominous signs. She is back in the PICU and is still intubated. They are going to do an EEG to check out brain activity. Keep praying.

Surgery Today

The CT scan last night revealed no new growth in her abdomen (yea!) but that her shunt is not working correctly. She is being prepped for surgery right now and will be in the OR shortly. She will get a brand new shunt and they will be able to look around. Keep praying!

Monday, January 18, 2010

Update As Of Tonight

Rachel continues to be very tired and displaying the same neurological symptoms. Her blood culture has shown negative growth which means they cannot find a source/proof of an infection. Tonight the docs decided to do a CT scan. It revealed that her shunt is malfunctioning and fluid is building up on the brain. Now you remember that the VP shunt (Ventriculoperitoneal shunt) was placed in October 2007. Rachel needs a shunt because her spinal tumor has interrupted the normal flow of cerebral spinal fluid (CSF). When this happens, fluid builds on the brain creating intense pressure. The shunt diverts the CSF through a tube into the stomach. A shunt malfunction could mean several things. The doctor mentioned a few...
1. Protein cell buildup in the shunt (possibly protein=dead tumor cells?)
2. constipation (causes the pressure to back up)
3. A new growth in her abdomen
They are doing a CT scan of her abdomen this evening. This could possibly mean a surgery for her tomorrow if she needs a new shunt. She also will be moving to the pediatric intensive care unit for closer monitoring. We will post more when we know more.

Sunday, January 17, 2010

Back in the Hospital

So the New Year continues to be nothing new for us! Rachel seems to have another infection that is wiping her out. We were supposed to go to Disney World tomorrow but I just had to call and cancel everything. Hopefully we’ll get to go in a week or two or a month when she’s feeling better. The nice thing about going with Make A Wish is that they are very flexible and it’s easy to change the dates around due to Rachel’s needs. We really want to take her because we have already cancelled another trip to Disney when she first got sick. Maybe the trip planned can finally happen soon! Rachel is in the hospital and we are waiting on blood culture results to find out for sure what’s going on. She looks pretty bad so they want her here for observations and they started her on some antibiotics. She is having a hard time staying awake which is why they think her body is fighting infection. We don’t know how long she’s going to be in the hospital this time but we definitely want her looking better before taking her anywhere. I will post more when we know more, maybe tomorrow.

Trip to MD Anderson

Last Wednesday, we went to Houston and met with the doctors about Rach. It turns out that there is a new growth in her brain. They think that all of the growth that she had before has been stopped by radiation. We won’t know for sure for months because we’ll have to watch the scans. The new growth is on the left side of her brain and is blocking her nerve pathways transmitting to the right side of her body. She is having trouble using the right side of her mouth, her leg, & hand. Needless to say, it’s caused some frustration for her. She’s not able to walk right now and speech is not where it was. The doctors are pretty confident that radiation can take care of this new “aggressive mutation” (that’s what they call it). The only problem is they can give her more radiation if we wait longer between the last radiation. So she gets to do more chemo for a few months. Hopefully, the chemo will do her some good and we’ll see some improvements soon. We were hoping to be done but this isn’t the worse news we could get. We just have to keep pushing forward.

Monday, January 11, 2010

Still waiting to hear from MD Anderson

Ok, I know that I have alarmed everyone and left you wondering what we're doing. We still don't know. The scans have been sent to MD Anderson and we are waiting to hear back from her docs. They were out on Friday. This weekend has been a rough one. Rachel started having a lot of trouble walking on Thursday and now she can't seem to do it at all. Her right leg keeps giving out so she won't even try. She's also very sleepy and has trouble staying awake for long periods of time. We took her to her first movie this weekend. She saw "The Princess & the Frog" and really seemed to like it but we think she was most excited about the popcorn! Today has been pretty uneventful just waiting around to hear what our next move is. She's going to be getting treatment in Houston but we don't know what yet. We're just tired of waiting on them to decide! This is agonizing to say the least!

Thursday, January 7, 2010

First Update of 2010

I know that I haven't written in a while but it has been very crazy! Rachel started to have problems right before Xmas. She still has trouble using her right side. Her hand just hangs there and she's having some trouble walking on the right side. She also had a staph infection last week in her port. She was in the hospital for one night because she had to get some IV antibiotics. They let us come home and finish the IV drugs at home for the next 6 days. I became nurse mommy once again and have decided that I'm putting RN behind my name! I had to mix the drugs and hook her up each time. Surprisingly enough, it wasn't very difficult and it totally beat being in the hospital!! She has successfully gotten rid of the infection. It took us 5 clinic visits and spending 12/26 in the ER to figure out the problem in the first place!

She had a MRI today and we got news that we weren't expecting or wanting. We were hoping that it was just inflammation from the radiation that's been causing problems but it turns out that there is still some growth in her brain. The radiation seems to have taken care of her spine but not the cells in her brain. We are looking into our next options. We are going to do something. maybe radiation or chemo, doctor here leaning toward chemo. We have to talk to Houston and see what our options are. We will probably be going there for the next phase. We shouldn't have to stay there, just go back and forth- yeah! :( Needless to say, hasn't been a god day and we're pretty bummed. We still need to talk to the doctors at MD Anderson to get their take so I will try and post again soon when we hear something.

We have decided to move up Rachel's Make A Wish trip to Disney. They don't want us to wait at the clinic so we have moved it to the week of the 18th. Not much time to get ready but really looking forward to having an awesome time. :) I have some cute pics from Christmas, even though Rach laid on the couch the whole day, and I will post them later. I just haven't had much of a chance to be on the computer lately and the hospital blocked blogs-argh!