A Day at the Beach

Today started off kind of rough but it managed to smooth itself out by the end. We planned to go to the beach today and show Avery the ocean and sand. Exciting right? Well for those of you with kids...going anywhere is not easy....let alone a beach. So after packing up EVERYTHING we would possibly need at the beach, we slathered Avery up with sunscreen. Unfortunately, Daddy slathered up her hands as well which went right to the eyes...well you can imagine where this went. Needless to say her eyes were swollen and tearing and she was not a happy camper. Daddy was stressed to the max and the whole day was almost called off!

Thankfully mommy packed cheetos and after a few of those, she seemed to calm down a bit. Course then we put her in the sand and it all started again! She does not care for sand or the ocean. She spent the entire day on the blanket with her new sand toys, eating cheetos and digging in all of the bags of crap I brought. Oh well! It might take some getting used to I suppose. Good thing we have a much lighter schedule here in Florida and might be able to make it to the beach a few times. Lord know she deserves it!



Jenn

Jacksonville

We arrived last night around 6pm and went to the apt to meet the landlord. The apt is perfect. Close to the hospitals and within walking distance from a Starbucks, sushi, Papa Johns, and the grocery store. We got in last night with plenty of time to unload and get ourselves somewhat unpacked and then Jeremy walked down the street to pick up some dinner. This morning we walked over to grab some coffee and take in the sites in the park. We are 2 blocks from the St Johns river and it is an absolutely beautiful area.

Tomorrow we have to be at the hospital at 9 am to meet the Dr's and nurse practicioner and then Avery has another MRI in the afternoon. It will probably be a long day, but more planning needs to be completed prior to her radiation starting. This week will be busy with evaluation exams and meet & greets and will keep us running. Luckily Jeremy is here with us. New cities give me anxiety so I feel better having someone here with me to help me figure it all out. Of course I was a pro in Memphis when we left, so now we are back to being the newbies in Jacksonville. We'll get the hang of it though!

Avery is doing really well. It's amazing how much quicker it feels like she is picking up on things now that the chemo isn't weighing her down and making her feel ishy. We are amazed everyday by her new discoveries. There is a nice rug on the floor here and it is helping tremendously with her crawling. Before long she'll be cruising right along!

This is our new place...

Jenn

Driving to Florida

Feducial surgery went fine and Avery was in recovery before Jeremy and I were even back from picking up TOGO food in the cafeteria. She did great and was fine after waking up. She had a rough night last night though and we aren't sure if it was due to being a little backed up or if she was a little sore on her noggin.

We ended up getting both places packed up by 11 am and we started on our journey to Florida. Our plan was to drive down hwy 55 through Jackson, MS and take hwy 10 all the way to Boloxi before stopping for the night. The trip should have taken about 6.5 hrs however it took a little longer. We decided to go up the shoreline in MS and take in the view. NO OIL SPILL SO FAR. However, once we attempted to find a place to crash for the evening we were greeted with NO vacancy! Apparently a ton of people are here waiting for the oil spill to hit the shores in MS and AL. Some are here to rescue animals, some for barrier building, others are just weird and are here to gawk. We finally managed to find a place closer to Mobile, AL around 8:30 and luckily its a newer one with a king bed for mommy & daddy and a pack n play for Avery -- which means not having to totally unpack the car.

Jeremy has decided we look like the Clampets and that everyone is staring at us as we drive. I think its cause our totes on the tailgate shelf are pink and he is a boy. We are packed to the max of course and I've been told we can't accumulate anything in FL. We ended up having to leave behind some things as we ran out of room! No worries -- all things we can purchase easy enough.

We really figured out we were in the south this afternoon when we ran into some traffic. As each car in front of us veered off and drove up an embankment off the interstate to avoid the traffic delay --we watched in amazement. Then we finally got up to the issue and just as we got there we heard BOOM BOOM BOOM and right next to the road they were setting off mortars and playing WAR...I mean we saw guys parachuting in and a huge helicopter nose diving and I am not kidding this was on the edge of the interstate in between the entrance ramp and us.....OMG. Who does that? That was totally not safe. They are lucky we didn't veer off the road ourselves and cause an accident. Bizarre. Then as we went to check out different hotels for vacancy we found half of them were smoking hotels....I didn't even know that was legal in the US!

We are so glad to be moving on with our journey -- thank you to everyone for all your continued prayers and support. Radiation is going to be a somewhat easier treatment for Avery hopefully, but there are still risks and side affects involved. We'll need all the prayers we can get that this stage goes smoothly and she is able to continue on with her development. She is doing so great and surprises us every day with something new. More and more she is understanding things and working so hard to move forward. They don't think we'll be walking unassisted by the time we come home but we may be close. PT at St Jude was looking at a walker for her to start using in the up coming weeks, so we'll see if FL PT agrees.

I suppose the 3 of us better get some sleep as we have another long day of driving ahead of us. We should have about 8 hrs left and we will take hwy 10 all the way to Jacksonville. We are really looking forward to it!

Jenn

Memphis Zoo

We had a very fun day at the Zoo today! Since our surgery was moved to Friday we had the whole day to do anything we wanted so we opted to check out the Memphis Zoo. Avery had a blast and only fell asleep during the nocturnal exhibit for obvious reasons!

Surgery Post Poned

Avery was to have surgery tomorrow morning to place her Feducials, however Dr Boop has decided to post pone the surgery due to low counts. As predicted, her ANC has dropped to 700 and although this is high enough for us to start another round of chemo, he does not feel comfortable doing the surgery. We have moved the appt to Friday morning instead. This of course throws the travels plans off a bit, but as far as I know we should still be allowed to travel on Saturday. In the mean time, we are waiting the arrival of Daddy on Friday morning and keeping busy with Nana Bonnie. She brought with lots of new distractions....which is a blessing as Avery is getting bored with the handful of toys we have here.

Tomorrow we might hit up the Memphis Zoo if it doesn't rain since we suddenly have a free day. Thursday we have a lunch engagement with the big wigs of Ann Taylor. They are huge supporters of St Jude and I have been asked to speak at the engagement as a voice from the parent community. I am so grateful to have this small opportunity to give back to St Jude and of course we all know I love to talk! FYI Paychex...Jenn is working on her IDP even when she is away! There are a lot of major donors to St Jude and I will gather a list of the top ones so everyone is able to see where to go when in the dilemma "Target or Walmart" "Ann Taylor or Limited" etc. I know I will be making very conscious decisions from now on.

All in all, we are having a pretty mellow week. Avery finally pooed this afternoon and we were able to get a stool sample for the C Diff test. Cross your fingers people -- we want out of isolation! At this point we'll most likely get out on Friday, but who is counting days anyway (uh day 11 is today)?

Jenn

MRI Results May

Avery's MRI and Spinal Tap were clear! No new concerns, growth or cells were found in either test so we are very happy! Avery's counts are also on the way back up for now so her G infusion has been shut off. This means a whole weekend without the hospital and we couldn't be more happy...well, I take that back. We'd be flying high if we were out of isolation as well, but no such luck. Uncle Rob is here with us this weekend and we are hoping to get out and get some fresh air tomorrow. Not sure if that will happen as Mother Nature has some storms in store for us here in Memphis. Monday starts another round of tests for Radiation simulation that requires a cat scan and MRI sedation. On Wednesday we will be admitted at 6 am for our feducials at Lebonhuer Childrens Hospital. Dr Boop will be implanting 3 small screws in Avery's skull for the Radiologists to use as guides when she gets her radiation. These are permanent and will be covered by her hair....should she ever get any. Her eyelashes are starting to come back in and they are adorable.

We are busy preparing to leave Memphis and hit the road next weekend. Jeremy will be coming down on Friday to drive us to Jacksonville, FL where they will be doing Proton Radiation on Avery. She has 2 weeks of prep work followed by 6 weeks of radiation, M-F. Her first radiation treatment will be on June 7th. We have decided to rent an apartment while in Florida to give us a little more privacy and for more convenience. The Ronald McDonald house is not entirely meant for families to live in. It caters more to those that are in need of a place to sleep and shower while their kids are in treatment. We found a place that a family from St Jude just left and they said it was perfect. The neighborhood was great and within walking distance to the grocery store, restaurants and shopping. The couple that own the home are very sweet and helpful - exactly what we like!

We are very anxious to move on with the next step of the journey, although saddened to leave the comfort of St Jude. Avery has done a terrific job with the chemo and the Dr's are very happy with her progress.

Jenn

Hearing Test

Avery had her hearing test this am and did very well. Unfortunately the tests revealed more hearing loss. The Dr said she did very well for someone her age and that this type of loss is very common and in a lot of cases could have been even worse. At this point they are holding off on hearing aides but they will reassess her in July to decide whether or not she will be using them. At this point her hearing loss is such that it will be difficult for her to hear sounds in the "s" "f" and "th" range. As she is learning to talk in the next year, this will become extremely important, so we may decide to use them come July.

Avery's counts are on the way back, they were 300 today so hopefully she will be past the nuetropenic part tomorrow. Jeremy leaves in the morning and we'll have a few days just us girls before Uncle Rob comes to claim all his pennies from Avery! She is doing really well in PT and with the chemo on hold for now we are expecting to see her take off. This weekend we worked on walking and she was absolutely thrilled to do it....hopefully that continues and she will be walking at her welcome home party this summer!

Jenn

Happy Mother's Day

Happy Mother's Day to everyone! We are spending the day at the Grizzly House as Avery has been put back in Isolation for C Diff again. She also has low counts so we can't be out in public at this point. I got to sleep in a tiny bit today and Avery gave me a fabulous new pair of behind shaping tennis shoes. I've been talking to all the nurses about these shoes for the last few months and they swear they work! I can't promise a fabulous tooshie by July, but I am sure going to try! Jeremy arrived on Friday and was just in time for the C Diff discovery and our move to the Grizzly House. Thank goodness he was here, as she technically can't go to the Target House....and I can't leave her in the car while I pack up a few things to take! She is doing ok this weekend. Counts being low make her feel crummy and C Diff can take a toll on the tummy as well. So far she really isn't exhibiting symptoms of the C Diff, but you can't be too careful.

This week will be a busy one as we start off with an early morning brain stem auditory test at 7am tomorrow....apparently they forgot my request to not have appts at the butt crack of dawn. Good thing Dad is here. We also have our MRI and Lumbar Puncture on Thursday. Avery's counts have to be at least 500 in order to do those, so pray they go up in the next 3 days and we can stay on track.

Uncle Rob arrives on Thursday and will be here through the weekend with us and we can't wait to see him! He always makes us laugh! Well I better get back to things....We hope everyone has a fantastic Mothers Day -- you all deserve it!

Jenn

My New Specs!

Puked on again...

The last two days have been rough ones to say the least. Avery has been a slightly unhappy camper, as would any of us be if we had been filled up with chemo while cutting molars in all areas of our mouths. Thankfully Nana Lori has been here to help out. As of tonight we have now done the puke and rally routine twice, one of which included vomiting right down the front of mommy's shirt. I'm talking inside the shirt people -- ewww....luckily it was only apple juice and pedialyte as she hasn't eaten much today. I had to give her credit though for choosing apple juice over Ensure -- she wanted nothing to do with that stuff tonight, thank the lord. For those of you that know her, she tends to be a very happy little girl, always on the go and pretty laid back. Today she was not that child. I saw tantrums over things she wanted and couldn't have and screaming for no reason. (Who knew a Starbucks cup and straw were such a commodity) It was beyond bizarre but totally understandable given the circumstances. I'm pretty sure I throw my own tantrums when I don't get my way or when left alone for longer than 3 days....so I totally get it -- just very strange coming from Avery. All the Dr's and staff kept saying how unlike her it was.

Avery was fitted for glasses yesterday... blue ones so they match her eyes. They should be in at the end of the week so I will post a picture when she has them. The eye Dr is hoping this will help her lazy eye that she has as a result of the surgery. In 2 months they will look for improvement and see if we need to change the plan. Her ankle braces also came in this week! We were really excited to get them as we ordered them in pink camo -- daddy's favorite. However they turned out to be more of a tie dye than camo, Oh well, still cute. These should help her ankles have more support as she learns to stand and walk -- nothing permanent, just helpful. Her counts are still up, but she is definitely feeling worse this round than ever before. We have her on all 3 anti-nausea medications, getting them as often as possible and we still have been tossing our cookies. Hopefully that will end soon and we can move on with low counts and getting those back up. Next week we will be busy busy busy as she prepares for FL and finishes the chemo round. We have an Auditory Brainstem procedure (sedated hearing test) on Monday and MRI/Lumbar Puncture on Thursday. We also will have a PET scan, Feducials implanted and radiation simulation the following week -- and before we know it we'll be headed to FL.

Tomorrow I meet with the coordinating nurse for the Radiation plan. I am hoping to have a much better idea of the plan moving forward....well actually I really just want them to follow the plan I already have in my head because that's what I am going off of for now. It would be much easier if they would just jump on board, however we all know they probably have their own idea of what this looks like -- we'll see who wins.

Well I am on my way to get the laundry and relieve Lori of Avery duty -- yes it's almost 11 pm and Avery is wide awake -- Puke and Rally people, I'm not kidding.

Jenn