Hope for Baby McKenna

Today is August 31, 2010… for another hour or so anyways… As I think about tomorrow September 1st all I can think of is September is NATIONAL Childhood Cancer Awareness Month. To think that there is a National Month to raise awareness… And I personal never knew this until our daughter was diagnosed with Cancer. I also never knew Gold was a color of ribbon to support Childhood Cancer Awareness. Of course everyone recognizes the Pink ribbon for Breast Cancer Awareness, as well as October for Breast Cancer Awareness month.

Let me first say NO one Cancer is any more or less important or sever than any other form of Cancer! It doesn’t matter if you or your families have felt the impact of Skin Cancer, Breast Cancer, Lung Cancer, Leukemia, Childhood Cancers ext. The list could go on so much further! Cancer is Cancer! It is COMPLETELY life changing from the moment the word is uttered!

So the question I raise is How does the Gold ribbon become as well recognized as the Pink ribbon? How does September become as noticed as October?? What has to happen for more people to be Aware of Childhood Cancer?
With Cancer like any other illness Early Detection is Life Saving! I realize we love our children before they are even conceived and we would love to keep them out of harm’s way! So does this mean we just turn a blind eye to illnesses we can’t personally protect them from? If we as adults care for ourselves and get our blood test, Scans, and Exams to check for cancer and other illnesses… Why haven’t we demanded the same early screens, test and detection for our children?
That’s my rant… Don’t be surprised if you hear more about that during September!

I would like to say in closing McKenna is doing great! She has learned a new sign “Potty” (technically we sign toilet! it’s an easy one!) She is working on going potty in the big girl potty! On her own time we don’t push the issue she does it when she wants to! We have been very busy at home enjoying our good days! We have had an ENTIRE week without any Doctors appointments and it has been GREAT! Thursday she goes in for a Bone Marrow Transplant Follow up appt. and Friday we go for our initial consultation with her Radiation Oncologist. I will update about our next phase of treatment soon!

Thank you for your Thoughts, Prayers, and Support!
-Brittney

McKenna is doing amazing! Since the last update she did have to have a pain pump to help with pain management. However, she did not have to have a continuous drip of pain meds it was simply a dose every 3-4 hours. It is highly common for kids in transplant to have a pain pump for a good period of time, the pumps are usually set on a continues drip for a portion of that time. McKenna surpassed expectations and only needed hers for a few days! Last Tuesday (08/10 Day+9) the doctors began telling us that McKenna was continuing to exceed their expectations! We have begun the home care teaching, most all of it is stuff we already know! But its protocol to go over it again, its like a recap. Yesterday (Day +10) McKenna had an ANC of 20! Yes this is still low but it is higher than 0! And today (day +11) her ANC is 127! Her ANC must be 500 for 3 days in a row for us to know that the stem cells have grafted and she is on her way. Her doctors are thinking she may be able to go home as early as Monday! Which I would like to add is only day +17! The usual transplant stay is till day +28. Way to Rock the Transplant McKenna! Thank you for all your thoughts and prayers!
-Brittney

It has been a long week… McKenna’s Stem Cell Transplant was Friday! She did great! Chemo has begun to take its toll on her. Her ANC (Absolute Neutrophil Count) is at 0, which is normal its what chemo does. This round of chemo was especially hard on her little tummy. She is no longer eating by mouth so she is now getting IV nutrition and slow NG feeds. She hasn’t done that much throwing up this time however; she has had a lot of really loose number 2’s. Poor baby. She has had many blow outs this last week But she is fighting hard and strong! McKenna is still getting out of bed at least once a day to get up and play even if its only for a few minutes! She is in pain and cranky but we try to keep her as comfortable as we can! Her doctors are very happy with how well she is doing. Thank you for your thoughts and prayers!

So we are continuing down the road of transplant…. I messed up what day on the road map we were on. Our admit day was actually Day -8! See how I was already trying to shorten our stay the fist day we got here! So my last updated is falsely titled! Today is Day -5 McKenna is still getting Chemo right now. Tomorrow (Day -4) will be her last day of chemo. Then she will have 3 days of rest before she gets her stem cells back on day 0 (Friday August 6th).

McKenna did throw up a bit yesterday… Today she hasn’t! She is still eating and playing! Today we taped some paper to the wall in her room and she did some painting! I might just be a fan of hers, but I think we may have a future Artist she can really move a paint brush!

I’m feeling a bit out of our normal routine already. Ha “Normal Routine”… Those are words to laugh at! We didn’t get to make it to church this weekend and I realize that we won’t be able to attend church or anything else as a family for the entire month. Yes, we knew transplant and isolation were coming and that they would be 30+ days long. Knowing about it and planning for it is far different then actually being in it! Now that we are here and it’s all really happening I look around the room, I look out the window and know that’s it for this month! This is all she can see, all she can do, and all she can explore! When I walked into the hospital this morning I was just thinking about how awesome it would be for McKenna to be able to go outside and enjoy the fantastic AZ summer rain and overcast. I always loved playing in the summer rain as a kid and I know she will like it too. We know and anyone else who has seen McKenna at church also knows that McKenna really enjoys going to church every weekend. So it stinks that she won’t be able to go this month. However, Mommy and Daddy can podcast the services we miss! Technology is pretty amazing!

We just have to keep rolling with the tides of life and living in the rays of faith!

-Brittney

Today was the first day of our 30+days of McKenna’s “Transplant” (autologous purged stem cell transplant) phase of treatment. It will probably feel like longer because McKenna has to stay in isolation for her own safety of course. Today has been a great day! We are all settled into our hospital room. Today is day -7 she started IV fluids to prepare for chemo which starts tomorrow day -6. She will get her stem cells given back to her on day 0. McKenna had quite a few new toys and books to keep her busy today! We did put some away to sneak out and rotate through our stay! Hoping that helps her with staying confined to this room! We are just staying positive! And remaining in today not worrying about tomorrow or yesterday! We are Praying for healing! Thank you all for your thought, prayers and continued support!

-Brittney

McKenna has disconnected herself from her N.G. tube feed and climbed out of mommy and daddy’s bed because she doesn’t think it is time to nap today! Keep in mind the feed was still going, meaning that all the formula kept dripping onto the comforter, as well as, she managed to climbed out of our “BIG” bed with no bumps, thumps or bruises! Then we had a major blow out! Yes yes fun fun! After a bath and cleaning the floor we think its time to settle down and play with toys… Oh no, the fun doesn’t stop yet! Out comes McKenna with the books and toys that stay on top of her dresser and are only played with while closely supervised so she doesn’t rip, tear or break those toys and books! So mom puts those toys away…. Then out walks McKenna with a t-Shirt over her head so she can’t see where she is walking…. And she walks right into the T.V.!

I think that someone is very adventurous today! Dare we call her Baby McKenna Jones! Watch out Indiana Jones you have an up and coming rival!

McKenna’s Oncologist has informed us our plan is to move forward with transplant. The calcification of her tumor threw off the scan and the MRI did measure the tumor smaller than the CT showed. Our plan is to move forward without another surgery as of today. The remaining tumor is entangled in very important vessels to McKenna’s Left Kidney as well as vessels to her Small Insistent at this time it cannot be operated on safely.
We will go through with the high dose of chemotherapy and her Auto Stem Cell Transplant this upcoming week. This is the part of treatment that McKenna will remain at the hospital in an isolated room for a month. Yes, Michael and I (Mom and Dad) will be able to be with her. We will continue our fight! We will continue in Faith! Thank you for your thoughts, prayers, and support!
-Brittney

On Monday we were told McKenna’s MIBG scan showed NO new tumors and her bone tumors are gone! We are thankful for that news! However the CT scan was considered inconclusive, because according to the surgeon she removed about 97% of McKennas main abdomen tumor, though according to the CT only about 50% of her abdomen tumor was removed. Then on Tuesday McKenna had an MRI to get a better look at her abdomen. So today we sit anxiously awaiting a conference call from McKenna’s team of Doctors to let us know our next step or our “Game Plan” from here. Considering her surgeon is a part of this conference we are anticipating the chance of a second surgery being highly possible. We have mix of emotions which is understandable and we are sure it is to be expected. The greatest emotion we feel at this moment is Faith! Faith that McKenna has far more FIGHT in her! Faith that with God all things are possible!
-Brittney

Matthew 19:26
Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

I realize that life is hard. We have struggles and we work through it. Tonight, I just continue to think of how grateful I am for my husband. Thank God for putting us together. We are an Amazing team! Without him, my days are even harder! This weekend has been a bit rough for McKenna and I while Daddy is away for a few days. McKenna has been great! She is eating, playing and being a rambunctious toddler! But, in the morning she wakes up and walks around the house saying “Da-da” and looking for him…. She also became very clingy to me all weekend, at church and dinner tonight… My cousin pointed out that it may just be because I’m the only one of her two parents and she isn’t sure what’s going on… But I can’t really explain to her that Daddy will be home Monday or Tuesday… All she knows and understands is he isn’t here right now. So this makes Mommy a little stressed….

So what? the house is a bit messy and the dishes need to be done. I am making a conscious decision to change my perspective and behavior. I no longer want to be the family with the neat and tidiest house! We are not the family that has “Life” all put together like you would see on T.V. We are simply a wonderful, loving, caring, sometimes disorganized and completely confused family! Who now spend more quality time together creating those everyday moments that just take your breath away! This is our family of teamwork, hard times and laughs!

-Brittney

McKenna has had every test possible over the last 2 days. We know the preliminary results of her hearing test are unchanged (she does have Mild to Moderate hearing loss in both ears per her previous hearing test in April) Unchanged is good it means she hasn’t lost any more hearing. They cannot tell us if her hearing will or will not improve…. But honestly hearing is the least of our worries… She has beautiful hands to talk with if need be. I always think of patience when at the hospital. Anyone who has spent a significant amount of time at a hospital knows that it is “hospital time” not our time. You show up 2 hours early because they ask you to… then you hurry up and wait. Wait to see this Doctor, wait to talk to this Nurse, then of course don’t forget the other Doctor and no one comes to see you until its crunch time, usually about 10-15 min before your scheduled OR time. It’s always HURRY UP and WAIT. You learn that real quick…. But the hardest part of waiting…. Are the days, which feel like months, until you get all the results! As much as you know you want them to be accurate and take their time to read the scans and test correctly… You really want instant answers too! Just to help you sleep a little better at night. Ya know? So now we wait…. We continue to have faith and pray for positive results and McKenna’s healing!

-Brittney