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.