Miss Mallory is getting her 4th Blood Transfusion.
Her hemoglobin was 8.2 three days ago and has remained there since then. I had to fight them to get a CBC done again. Since we are dealing with surgery and not the oncology team they wanted to run a " reticulocyte" count to see if her bone marrow was regenerating her blood cells fast enough. And it's not. If I would have dealt with the oncology doctor we could have discussed her blood counts and had this taken care of. Now we get to sit here till 7 while she gets a transfusion.
I wanted her to get one, being anemic and a baby = double trouble. She gets cranky, lethargic, and pale. This equals miserable for EVERYONE in our house. So I am glad she's getting it, I'm just not happy with how many hoops I had to jump to get it done. I realize we are not the only ones on this floor but we had to get permission from surgery, then they contacted oncology, then they got back to surgery, finally got the order in, ran the CBC, then the reticulocyte count, and then ordered blood. 5 hours later. We could have skipped a GIANT step had we not been admitted under surgery.
We will NEVER be admitted under surgery again, even if I have to be here several hours before we get admitted. We could have addressed this issue yesterday and been home earlier today.
I am hoping that we get some results early next week, I am very very fearful for Miss Mallory because she didn't respond to this treatment. We haven't been able to talk to a doctor so we don't know if this pushes her to a stage 4 or stage 4S neuroblastoma. We are fearful that the NMYC is going to come back amplified which takes her from a 90% survival rate to under 60% and she would have a much higher chance of relapse if this is the case. High amplified stage 4 Neuroblastoma has very low survival rates, high chances of relapse and are very very hard to treat. We can only pray that they were correct that she has the Non Amplified Neuroblastoma. We are also fearful of the ALK gene they are testing for, if this is the case it is a genetic marker that one of us carries. If it is the ALK type of Neuroblastoma they have a specific treatment for it, but Jillian and any other kids we might have, have an increased risk of having Neuroblastoma.
Talk about a huge heavy weight on our shoulders right now. My mind is weighing every possible outcome right now and no matter what it's going to be a tough road. I keep kissing her little bald round noggin and all I can think about is not feeling the warmth of cuddling up to her, not seeing her smile, not hearing her laugh. I know I should try to steer my head far away from these thoughts, that I shouldn't think this way, I haven't given up, I won't give up but they are still there. My heart still aches.
I am going to try to stay as positive as possible, allowing myself to have bad days and good days. This is just tough, it's unfair, its brutal, its ugly, Cancer is UGLY. Mallory's 1st year is going to consist of being in and out of the hospital. Instead of looking forward to her rolling over all the time, we get to worry about her tangling up all the cords around her, instead of looking forward to her crawling we have to worry about her pulling her broviac out of her chest, instead of looking forward to her walking we get to be worried about chasing her around with an IV pole. It's crap.
We're getting married in July, instead of looking forward to our wedding I am hoping Mallory will be done with Chemo by then, all I care about is her being better, her scans coming back clean, her being back to normal. I could care less about our wedding, we arn't going to have the time, the money, or the energy to plan anything. We most likely will not be going on a Honeymoon because we're going to be in Cancer mode still and I can't spend a week away from Mallory while she goes through this. I have to be in control of the things I can be. I don't want to designate tasks and stress over someone getting stuff done for me. I just can't deal with any of it, I can't think about it. I am very fortunate we booked the hall and church before Mallory got sick or else that would have never gotten done. I picked out my dress 2 days before Mallory was diagnosed, and Ry's Mom found the perfect dresses for Jillian and Mallory. So I have a few things done and that will just have to do. All I want that day is to walk down the aisle, marry my Best Friend, and have both of my daughters there to share in the celebration with us.
I honestly want to cancel the wedding, go to justice of the peace, get it done so I don't have ANY more stress right now. But we've already put deposits down that cannot be refunded. So it is what it is.
I am holding out SUCH hope for a Miracle, for a chemotherapy regimen that works for our princess pie. Thank you Cancer for the pile of shit you have thrown at us, it's making life unbearable some days. I'm sure this week is going to be FULL of those days too. Waiting is the worst part. Knowing that the cancer could be spreading as I write this post is nauseating.
Honey...go to the justice of the peace ..u can still walk down that aisle in July..Marry that best friend... don't sweat the wedding...I WILL DO WHAT ever needs to be done!!!! Become Mrs Wiersma...You two were made for each other like bread and butter!!! I pray for u hourly..daily..every minute but I pray for Mallory the most...God said that's ok too!! Your dad and I are very proud of u both..but most proud of Mallory and her smile!!!ReplyDelete
Love Mom and Dad
I will help with everything for the wedding too! I'm practically a pro after ours this year! You have a clear idea of the beautiful simple wedding you want and your girls and momma can make it happen sister! You've got tons of crafty boned woman supporting you! We got this! Love you!Delete
May God hold this precious little package close to enough to his heart so a miracle can be given to Mallory,and for God to gently hold her in his palms so no more harm can come as a result of all the treatments she has to endure .God Bless the child and Mommy & family too .Soft Fuzzy Hugs for this little darling <3ReplyDelete
I think that you have a few friends that are willing to make sure that you get to celebrate YOU in a few months :) Its something for you to look forward to and if you can't handle some of the stuff I know some people that are willing to take THAT stress away at least :) Hopefully by that time you will have more to celebrate than just you and Ryan's marriage. :) Love you guys! Can't wait to come over Wednesday and help you out and hopefully give you something to smile about:)ReplyDelete
Keep praying and do not give cancer anything it doesn't deserve. It's evil and it will not get it's way. If the doctors originally thought Mallory was nonamplified, then let's hope it continues to be that way. Miracles can happen no matter what. I was talking to a friend who knew someone who had a child who was diagnosed with cancer, and given a very low survival rate. She is now 18 and a thriving young woman. Continue to insist on talking to your doctors, and yes being demanding as you can be when you have to, about her care, different chemo options, all of it. Continue to focus on each day with Mallory as being pure joy, all the inspiration you and her have given so many people from all over, and the continued laughter and love you will share with Mallory for years to come. She is going to be one heck of a person when she gets older after all she has been through. She is so blessed to have you and Ryan has parents. The love you have for your family is so pure, real, and beautiful. How many kids can say they have parents that love them like that? I teach kids who are drop out prevention, and many of them don't have one person who cares if they are alive. Keep the prayers up, even though it does seem hard to keep the faith when it's impossible for me to understand children with cancer. I'll never be able to justify that. The only thing I think about, and it's with all unjustices in the world, is that even though faith is so hard to understand sometimes, and it's so easy to get bitter, angry, and sad, without faith, what would any of us have? Without thinking there is a purpose behind all of our lives here what would be the point? No matter how unfair things seem, without faith, we have no hope at all. There's go to be a huge picture for each of us besides what we experience here. Believe me, I struggle with it each and every day. My mom was a cancer survivor, I work with kids that get abused, get sick, get such unlucky lots in life. I haven't been blessed with a great boyfriend/husband or children, and that saddens me. So many unjustices out there, that's when faith has to be the only answer. Look at the beautiful things you do have, even in the darkest days. Keep up the prayers, as I am also (and many people in FL), and continue to be the amazing mom and person you are. I have been inspired by many great people in my life, but you are honestly right there at the top of my list.ReplyDelete
Wow! Reading your post even inspired me. What incredibly encouraging words!Delete
Loved reading this thank youuReplyDelete