Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Monday, March 25, 2013

Round 3 Started

Updating...copying from Facebook to update those who don't have facebook....
March 18th...Emily's platelets needed to be at least 30 to start. Got a bit nervous because she had a little nosebleed. They were 29, Dr Gowda approved her to start, but that Emily will have to start coming twice a week to check counts. Premeds are done and Avastin just started about 10 minutes ago and this takes hour and half then fluids behind, so almost 2 hours...another long day!

March 21st...Emily had clinic today and today started Day 1 of chemo of irenotecan and temodar. 

March 22nd...Clinic went well yesterday! Daddy and Emily were not there that long since she didn't need a platelet transfusion. However her platelets are still low, so we are constantly telling her to be careful bc of her platelets! Yesterday started the 1st day of chemo on day 4 for this round. Emily is a just a bit more clingy and emotional we noticed quite a bit last night! Chemo will go through Monday! Just a quick update!

March 24th...Today was day 4 of chemo and it started off pretty rough... Emily just wasn't feeling herself and not feeling well. She said her tummy was upset. After she laid down mid day for a little while she felt better. Tomorrow is last day of chemo and she will go back Wednesday to check her counts!

TEAM EMILY gear on sale!! Tees and hoodies. Adult and kid sizes.
Tees 15$ + 6 if you need it shipped
Hoodies 22$ + 6 if you need it shipped
(Xxl +2$)
PayPal fulltothetop4@verizon.net
Put order info in memo box- include address!
Local orders will be delivered to Wholesale Guitars aka Steve Bryant as well as delivered by Amy Gordy
ALL proceeds go to help Emily with medical needs and travel needs!!!!
Order window closes 3/30

Thursday, March 14, 2013

Chemo Delayed Again

Emily was so thankful to have her BFF, Lilly, camping with her this past weekend. The two together are so good together and they had a lot of fun. However, Emily had nose bleeds (that we were able to control) all weekend, and bruising on her legs, so we knew come Monday that she wouldn't make counts.

Come Monday, took Emily to the clinic and she started to get petechia on her chest, so I knew her platelets were low...after waiting a while counts came back and her platelets were 14... 14 meaning can't start round 3 with Day 1 of Avastin and on day 4 chemo. 14 meaning she needed a transfusion. After a long day in the clinic, Emily received platelets after the premeds and we headed home. We were scheduled to come Thursday for counts and to meet with Dr Gowda for plans.

Clinic was quick today, which was great... Emily had her counts checked and while we waited, we met with Dr Gowda. Platelets are becoming an issue because it will become linger and longer between each round that we may wait longer to have her platelets recover on their own. We knew that the Avastin could do this, however with the last round, we are finally seeing some improvement and with that we want to move forward. But platelets may not allow us to move forward, because they need to be at least 35 to start. Dr Gowda went over a trial for resistant neuroblastoma for patients whose platelets aren't recovering and are needing their stem cells. We are not sure that we are interested in this at this time just to receive her stem cells, but we will look it over and also send it to Dr Sholler and get her take on it. This trial consists of 5 different Chemos and "It was designed to maximize cytoreduction via high dosing of synergistically interacting agents, while minimizing morbidity in patients with resistant neuroblastoma (NB) and ineligible for clinical trials due to myelosuppression from previous therapy." While at this point we don't want to give Emily 5 different Chemos, but we also at weighing options to make sure that Emily can continue with this trial.

Today's platelets were 42, which we know most of those platelets are from the transfusion, so we don't know how much they are recovering on their own. Dr Gowda gave us the opportunity to start the next round if we wanted too, but that he recommended we waited until Monday. As long as Monday they are 30 and above, he will allow her to start the next round, knowing that this next round is going to drop them even more. So, Monday I will take Emily back into clinic and hope that her platelets have maintained to recovery on their own. If they are 30 and above, she will get day 1 of Avastin running over the hour and half along with premeds before hand, and the. Day 4 starting the two oral Chemos at home. We did make the decision today that after the chemo that we would not like Emily to get the GCSF (Neupagen shot) that she received the last two rounds because there has been a study down that the growth hormones in the shot may cause progression.

The fear is allowing to much time in between each round and allowing neuroblastoma to take over. Neuroblastoma is once again making dad and I make decisions that are hard to make, and we know that we need to figure out something to help her platelets. We are still figuring out when we will be back in Michigan for scans to see how things are looking, but at this point we still need to get this next round started.

Please send your love and thoughts that the 3rd round will start Monday. Make sure you hug and kiss your kids and tell them how much you love them.

Friday, March 8, 2013

Didn't make Counts, Chemo on Hold...

Snowy drive in (yes I was stopped)
Wednesday Emily had clinic to check her counts and the expectation was to start Round 3 of the IV Avastin and home oral chemo of irenotecan and temador.

630AM, my phone rang to the County Schools saying school was closed because the snowy weather was moving in faster than what expected (when the night before we were not supposed to get anything). I looked outside and it was pouring down raining. Left around 9 once Daddy got home from work and it looked like it had been snowing for a while. It was a long trek into the clinic, but we made it safely.

It was busy in the clinic, so Emily was accessed and we waited back in the waiting room until a room became available. Emily's nurse came out after a while and said Emily doesn't make countys, her platelets are 21 and need to be 35 to start the next round. I certainly wasn't expecting to hear that.

The waiting game, for platelets to recover, makes me nervous. Nervous to wait, nervous that we are letting NB come back in, when this seems to be working.

After talking with the nurse practioner, Dr. Gowda feels confident with this regimen that Emily is on, and that he doesn't want her to move forward without the Avastin. That is great to hear from him... The avastin goes in and attacks the tumor cells that are in Emily's body and then the chemo that comes after attacks the remaining ones. Emily still has such a long way to go, and many tumors in her bones that we want the Avastin and chemo to take care of.

Plan is to wait until Monday, and bring Emily back in and have her counts checked. We are having her eat plenty of greens, and trying anything we can to get her counts back up to where they are supposed to be so that we can start the next round.

While we are nervous about the wait, at the same token it is nice that Emily has a little bit of a break and this weekend we are taking the girls camping and going to meet with Navid who started Projekt 3000. We look forward to meeting with him. Emily is even more excited because her best friend, Lilly from school is coming with her sister who is also friends with Jessie. So, they are all excited and we are excited about seeing them happy. Emily really deserves this and we are thankful to their parents, good friends, who are letting them come along with us.

Please send your love, hugs and thoughts to Danny Nardi's family whom Danny lost his fight to neuroblastoma and AML. Danny and family, we are thinking of your during this unimaginable time. While we never met, I know we have seen Danny's name on the door in Michigan while we have been there! Thinking of you! http://www.caringbridge.org/visit/dannynardi

Please make sure you hug and kiss your kids and tell them how much you love them. The most wonderful thing is hearing your kids telling you that they love you out of no where. Have a good weekend!