What lies ahead is quite intense for all of us and especially little Miss! She is going to be bombarded with intense chemotherapy, it is going to blast any remaining cancer cells and unfortunately also her normal cells. We are going to watch her get very ill and stay that way for some time. There are many risks both short term and long term with a stem cell transplant, risks that unfortunately we have to take. Addie's radiation doctor said it best... Addie's biggest risk is the cancer she has currently and it could kill her long before the risks associated with treatment could. We are exposing her to multiple things that cause secondary cancers (certain chemotherapy medicines and radiation) but those exposures are necessary in order to kill the awful cancer she is fighting now... Neuroblastoma doesn't mess around, it hits with a vengeance and is in it to win, unfortunately for Neuroblastoma we are too and we will NOT be defeated!!! Addie is strong and her body has shown that it is resilient and can bounce back, she wants to LIVE and LIVE she will!
We go to Iowa City on this coming Monday (November 3) and will be checking into the bone marrow unit for at least 30 days! Addie will undergo a weeks worth of intense chemotherapy which will cause her counts to plummet to a point of no recovery. On November 10 (my birthday) Addie will be given her saved stem cells back (they were harvested and froze after her second round of chemotherapy) which starts what is called the stem cell transplant/bone marrow transplant! Her cells are given to her in order for her body to recover, her body would never recover on its own from the intense chemotherapy! Addie's type of transplant is "easier" in the sense that they are her own cells (autologous) so she won't have to deal with Graft vs Host Disease which can be brutal and have intense side effects and complications! Addie is still going to face some pretty scary side effects and will be very sick from the chemotherapy but it is a blessing to not have that added risk of rejection! Addie's stem cell transplant is needed because of the amount of chemotherapy they need to give her not because her bone marrow is cancerous or infected... This is different from the typical reasons bone marrow transplants are given! Some patients celebrate the day they get their new stem cells or bone marrow because at that point they get a new cancer free system, likely from their brother, sister or a random donor that they matched with! In Addie's case we don't get that exciting "yay, new cancer free bone marrow!" but we are comforted that her body will be able to mend itself after the brutal chemotherapy and that she doesn't face the risks associated with rejection! The protocol Addie is currently on recommends stem cell transplant to kill any microscopic disease remaining and the research shows that it improves her 5 year survival rate, without this and later radiation treatments, her chance of survival was pretty bleak! Both of these treatment protocols come with a heavy set of precautions but we are urged by doctors to follow through with the recommended protocol to give Addie the best chance of survival!
Many prayer requests for Addie and our family as we face this next step... We will be in the hospital basically the whole month of November. Reed and I will be dividing our time between the hospital and taking care of our other two little sweethearts! This is going to be a very trying time for all of us but I know with lots of prayers, faith and positive attitudes we will make it through this!
The prayer requests...
1) No life threatening complications or infections... Addie will be at a very increased risk for infection and because she will have no immune system. A common infection to us could be life threatening to her! It is also possible for her to get something called VOD, which is a deadly liver toxicity that there is no treatment for.
Also pray that the chemotherapy would not cause secondary cancer... One of the types of medication she will get increases her chance for AML by 10-15% 3-5 years post transplant! Another medicine also causes additional hearing loss, please pray that her hearing doesn't get any worse!
2) minimal side effects and a speedy count recovery... Please pray that her side effects will be minimal and short lived! It is likely she will be sick for at least 2 weeks but sometimes kids are sick for more than 4 weeks! She will face severe mucositis, nausea, diarrhea, other GI troubles and others!! Please pray that her body welcomes her new cells and they integrate quickly so that she can recover!! She will likely have a feeding tube and we were told some kids struggle to eat months after transplant, please pray this is not the case for Addie!
3) Pray that we will stay positive and hopeful... Pray that we will always feel united even though we may be apart physically! Pray that the time apart would strengthen us. Pray specifically for Grace and Addie... Pray that they would always feel eachothers love and that the separation would not cause sadness and despair! Grace is already having a difficult time with what is to come, please pray for comfort and peace upon her, pray that He would give her wisdom beyond her years to understand that this is just temporary, please take her fears away!
4) Pray for good weather and safe travels, as we will be in the car quite often over the next month!
5) and lastly for now... Pray that we would all stay healthy so we can be around Addie!!
Thanks for all your love, prayers and continued support!! We would love to receive letters from you or pictures that your children have drawn while we are in the hospital, we would love books or hand written stories... Anything to pass the time!! I am sure grace would be delighted to recieve these too while she is at home!! It would be great to decorate Addie's hospital room with encouraging words and drawings by those supporting her!!! I'm not sure of our hospital address but once I have it I will let you all know... Our home address is 5115 Addison Drive, Cedar Falls, IA 50613.
We are truly blessed to have such an amazing support system!!
Go Team Addie!
