Monday, August 30, 2010


Tomorrow is surgery day. We have to be there at 6:00am, surgery should start by 7:30 and last between 5 and 7 hours. I posted more about the surgery here.

Specific prayer requests:

*Please pray for wisdom, confidence, and thoroughness for the surgeons.
*Please pray that Jackson's little body tolerates all it is being put through.
*Please pray that the plastic surgeon is able to use the gracilis muscle (the more expendable muscle of the options).
*Please pray that Jackson recovers quickly and fully.
*Please pray that ALL of the cancer is removed and that nothing is left behind.
*Please pray for calmness, strength, patience and peace for Ryan and I.

We appreciate prayers so much. Thank you for continually lifting our sweet boy up.

The past few days we have tried to stay busy and have fun! We did have to go to the hospital to get registered and have a count check (just barely above 1000--still not near as high as we expected, but ok for surgery) but it was a pretty uneventful visit.

Jackson also had another playdate with Jadon. They have so much fun together!! We also played at home alot, spent some time with some special cousins, visited the park a couple of times, went back to gymnastics today and got some cool new Buzz Lightyear shoes yesterday :)

{Best buds}

{A very short-lived tea party at the hospital}

{Doctoring up the horsey}


{Jackson loves gymnastics!}

{Sweet brothers}

Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12


Sunday, August 22, 2010


Surgery is NOT tomorrow as originally planned. Last Monday when we called to finalize everything, we were told the surgery date had been changed. After a couple of days of back-and-forth phone calls with doctors, we were given the 31st as the final date. The change of date was because there is a plastic surgeon involved and it was difficult to coordinate the orthopedic surgeon's schedule with the plastic surgeon's schedule.

The 31st is over a week past the original date, and by the 31st he will have been without chemo for almost 5 weeks. So, we weren't very happy with the change, but the oncologists are so confident in these two surgeons and really want to make sure they are the ones doing the surgery.

Last week, we just hung around the house. It is too hot to do much else! We were able to have a couple of playdates, which was nice. Jackson LOVED seeing his friends that he had not seen all summer.

{Swimming with Austin}

{Baby brother enjoying the water}

{Riding cars with Jadon}

Friday we headed to the hospital for a count check, a meeting with the plastic surgeon and to pre-register.

We got to clinic and had a pretty quick visit. He weighed almost 36 pounds! I was so excited but not really surprised because he has felt SO heavy lately.

Our hopes were that Jack's counts would be high enough for us to go to church today. His counts had not been checked for 10 days (the longest stretch this summer--it was nice to not drive to Dallas for a full 10 days!) and at the last check they were 600. That is still pretty low, especially compared to normal healthy people.

We really thought that his counts would start climbing pretty rapidly since he has not had chemo since July 26th.


On Friday they were 900.

I was honestly hoping for twice that. I really thought that the combination of no chemo and time would surely mean that we would see a big jump. Anything under 1000 is neutropenic--meaning it would be risky to get him around large groups where we can't really control who is around him. Playing with one friend is a little safer in that I can ask the mom if anyone has been sick. Can't really do that at the church nursery!

The risk is so much higher right now, because we don't want him to get sick before surgery. If he got sick, it would be delayed even longer and that is the LAST thing we want.

Along with wanting to keep him well, we also want to make sure he has some fun before he spends a week in the hospital. So Saturday we went to an awesome children's museum in Waco. Even though we had to take extra precautions like washing hands every 20 minutes and avoiding certain things, he had such a good time! Besides a few trips to the store, a couple of restaurants and a few trips to friends' pools (all with lots of sanitizing!) the museum was really our only real family outing this summer. It was so awesome to let him explore and have fun. We did get the occasional funny look since he still has a bald little head, but oh well :)

When we were at the hospital Friday, we also met with the plastic surgeon. When we first learned that the surgery would require a plastic surgeon, we were told it was because Jack would be losing tissue and would need a mesh put in to keep him from having hernias. We were told to expect an hour for that portion of the surgery. The thought of having something foreign in his body wasn't thrilling, but we knew it was for a very good reason and the process of putting it in seemed fairly easy and straight forward.

So, when we met with him we were not really expecting anything different from that.

Wrong again.

When will I learn that cancer related issues are never easy and straight forward?

In talking with the plastic surgeon, we learned that he will be taking muscle from another part of Jackson's body to replace muscle he will lose during resection of the tumor. This is NOT something we were aware of and we were both pretty stunned to hear him describe the process.

One option is the gracilis muscle. This muscle is in the thigh and is the most expendable muscle in that part of the leg. Meaning he would probably not miss it. The doctor said that he would only need it if he was a high-performing athlete. Of course I think he will go on to win gold medals, so I think he needs it :)

The other option is the rectus muscle in the abdomen. This muscle is used alot in breast reconstruction surgery. It is NOT as expendable as the gracilis, but the doctor did seem to think his other muscles in that area would compensate. If this is the muscle he has to take, it would require a completely separate incision up his tummy.

Another thing that the doctor told us is that the mesh he will be putting in to prevent hernias will not be synthetic, but will be actual skin. Cadaver skin or pig skin. I understand that this is something that is safe and happens everyday, but it is just hard to get my mind around it. Eventually, the foreign skin would be completely absorbed by his body as his body heals and repairs itself.

He also told us that his part of the surgery would take three hours. THREE HOURS. Add that to the minimum of two hours to take out the tumor and we are looking at a five to seven hour surgery. I have no clue how we will make it through those hours.

Add all that to finding out he will come home with drains and have to have limited activity for six weeks. Neither of these things will be very easy with an almost three year old.

So, we had kind of a rough day Friday. But we know that God has a plan. And even though I almost threw up quite a few times and cried more, I know that getting through Friday puts us one step closer to getting the cancer out of his body.

I wish they'd let us shoot, stomp or somehow destroy that tumor once it's out, but they are anxious to get their hands on it since it is so rare. Not sure how I feel about that.

We go back this Friday for another count check, to pre-register (this past Friday they weren't ready for us) and for Jack to have a pre-surgery physical. We have officially been to the hospital at least once a week all summer. I'm so thankful he is young enough to not know what he is missing.

Friday did have a few bright spots. We have been so blessed through the kindness of family, friends and strangers. We are so appreciative! There are really no words to express how much it means to us.

An anxious heart weighs a man down, but a kind word cheers him up.
Proverbs 12:25


Wednesday, August 11, 2010

PET scan and a postive change

Yesterday was a LONG day. Twelve hours from leaving home to getting home.

We started our day at 4:00am to try and convince Jackson to eat something before his cutoff from solid food at 5:00am. After falling asleep holding his bowl, he was able to stay awake long enough to get some food in his tummy.

A few hours later, we dropped off the baby with my mom and got on the road.

Only to encounter the WORST traffic we have seen all summer. The highways were at a standstill in every direction. So frustrating but we tried to stay positive because we knew we had a long day ahead.


We finally got to the hospital and got into the children's building. We had to wait awhile before even getting checked in and we had to wait more after. They were a little busier than usual.

{Reading while waiting}

{When it was time to leave, Jack said "Thanks for the ride firetruck!"}

Finally, a tech from radiology came to get us and a nurse from the pediatric floor came with us so she could access his port (we learned this week not all medical professionals are comfortable accessing ports so we were glad she was with us). It was such a weird situation--the tech took us to the tiniest, barest room right outside the testing room. Even the pediatric nurse thought it was kind of an odd set up.

Jackson was pretty upset at this point. I think he was getting pretty hungry and he knew we were not in our regular hospital environment.

After the rough start, the radiology tech finally got the radioactive dye going. Jack had to sit still for 45 minutes (ha) because the dye travels to the areas of most activity. We sat together and watched a movie so the time went pretty fast.

After the dye ran its course, it was time for sedation. The anesthesiologist went a different route this time (since his port was already accessed) and gave him "milk from a sleepy cow" through his port. It was a much calmer experience than having the masked sedation.

Ryan and I left after Jackson fell asleep. We were only away from him for about 30 minutes, much less time than we thought we would be.

Next, we headed to recovery where he slept (and snored) for a bit. While we were waiting to be released, a Child-Life Specialist from the Oncology floor came over and got Jackson started on the Beads of Courage program. It is such a cool program and I'm really excited about it. I'll post more about that later.

{Amy explaining Beads of Courage}


{Choosing beads}

We were released and at that point, we still had an hour before our clinic appointment. We killed about 30 minutes getting ice cream :)

{Yummy green ice cream}

We got to the clinic 30 minutes early and they called us back right away. That caught me off guard! I was prepared to wait and think and pray in that 30 minutes...I needed it. So I was pretty shaky when we headed back. I'm pretty sure I was babbling to the nurse about something insignificant.

Jackson did the normal stuff--weight and bp--before we moved on to the examination room. We waited for several minutes and in that several minutes Ryan said "Calm down Momma" about 10 times. :)

{He always asks so sweetly!}

The doctor finally came in and it was the doctor who gave us the original diagnosis (we never know who we are going to see until they walk in). We actually had not had this doctor since June. It ended up being a really good thing because he was able to compare the tumor at the beginning to now.

He sat down and got right to it, which I was very thankful for.

No growth.

No spreading.


I was so fearful of growth and spreading and so incredibly thankful that they were able to say definitively that it had not done either of those things.



So that was the good news.

The other news (not bad news, just not good news) is that the chemo did not do much. The MRI from May and the MRI from last week do not show any noticeable difference. However, the PET scan shows the tumor to be somewhat speckled, which could mean that part of the tumor is dying or dead. And in that case, then the chemo was beneficial. Along with that, when the doctor examined Jackson, he felt the tumor to be much softer and more pliable than the last time he examined him in early June. The doctor said he definitely felt a positive change in the tumor. So it is very possible that parts of it are dying. We are very hopeful that this is the case. They will not be able to say for sure until the tumor is out and sent to pathology.

Since the chemo did not do anything significant (that we can tell right now), the doctors determined that surgery is the next step. They feel that it was good that we did the chemo even if it helped just a little. Actually, the chemo kept it from growing or spreading, so the chemo did do something positive, but they think doing another 10 rounds would not be beneficial enough to put him through it.

We talked to the doctor for awhile about different things, one being that we will probably have to do some radiation after surgery. Then he sent us over to talk to the surgeon. Thankfully, he was willing and able to meet with us right away.

We got into his office and just went over the basics. The procedure, the concerns. LOTS of concerns. The actual mass is near vessels, nerves, his bladder, lymphatic tissue, his hip bone and pelvis. There are lots of possible situations that may come up during surgery, but he won't really know until he is in there. My stomach is turning just thinking about it so I don't think I am going to be able to type out all of our fears and possible scenarios, but please be prepared to pray with us that day!!
We will need all the prayers we can get.

{Of course we hit up the 'Toy Story' after such a long day at the hospital}

Surgery is tentatively set for August 23rd and we will be there a few days.

We are confident in our surgeon (and our God!). He is a really thorough and we actually met with him in the hospital in May. He has two boys also, the same ages as ours.

Overall, it was a good day! I will always take the positive news, no matter how big or small. My main focus is that the cancer will be out of his body very soon!!

THANK YOU all so much for praying with us and for us! It means the world to us. We still have a long, scary road full of unknowns ahead, but right now we are thankful to have this important step behind us!

Give thanks to the LORD, for he is good; his love endures forever.
Psalm 118:1


Monday, August 9, 2010

PET scan {that wasn't}

Oh what a day.

This morning we got up at 5, got dressed and ready, loaded bags and kids and headed to my moms to drop off the baby.

Then, we drove 45 minutes to North Dallas.

Next, we made our way into the Children's building, after finding a new way due to construction.

After getting inside, we waited, played, got vitals checked, answered the same 100 questions that were answered Thursday, waited some more, played some more, and read some books, all while telling Jackson No, we can't go home yet and No, you can't have any milk (heartbreaking).

And THEN. A sweet little lady walked out and called our name. So we start to stand up and gather our stuff to head back.

But oh no. She motions for us to sit. And starts talking. About how the machine was not working well this morning.

She should have stopped there.

Because next she told me that they did not know we were coming(!!) so there was not an anesthesiologist prepared to sedate Jackson. Obviously, someone at some point, did not follow through. Enter angry, frustrated, upset, not happy AT ALL Momma.

I am sure I would have been less upset had the only issue been the machine, because that is completely out of anyone's hands. But the other issue? Avoidable, 100%. I can't help but be irritated at the unknown person who made that mistake. Whoever it was, it was their lucky day. If that mistake was the only thing holding us back from moving forward with this process, I am pretty sure Ryan and I would have been hunting that person down. We were devastated when that little lady told us we would not have answers today.

Either way, it doesn't matter. It was not meant to happen today, no matter how much effort we put into making it happen. It's not our timing, or our plan, which is frustrating at times like this. Times when you are DESPERATE for an answer.

We had the option of trying again at 4:00 today, but Jackson would have had to stop eating at 9:30am and there was no guarantee that the machine would be working. He had already been put through enough and that is entirely too long for a 2.5 year old to not eat or drink. Bless his heart, he dove into his little box of snacks once we figured out the scan wasn't happening.

He was also pretty stoked to dig into a HUGE cupcake that we picked up at the hospital bakery on the way out.

Thankfully, Jackson got to plan in another new area of the Children's building and he is looking forward to going back and playing again.

We go back tomorrow. Our PET is scheduled for 11:00. I talked to the anesthesiologist so he knows we are coming. :) We have to be there at 9:00am which maybe allows for more sleep, but we will be waking Jackson up at 4:00am to eat before his 5:00am cutoff.

We meet with the doctors at 3:00.

I know I have asked for prayers a lot lately, but please pray that tomorrow goes smoothly, for Jackson to have no discomfort, for us to receive positive news, for patience and understanding. We are so grateful to have your prayers.

Be still in the presence of the Lord, and wait patiently for him to act...
Psalm 37:7



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