Journal History

Saturday, January 25, 2003

We get to go home today! Yeah!!! McKenzie did so good with her induction chemo last night. She didn't have any adverse reactions or any side effects for that fact. She is so unbeliveably strong.

Briefly I will explain what her course of therapy will be like and what it will entail for us. I will probably only update as needed or when anything happens, otherwise you can just assume that all is well. (hopefully, there won't be much posts huh?)

She will be on a regimen of Vincristine, Actinomycin-D, and Cytoxan. (this is what she just got last night). Her course is 48 weeks. Each have their own set of side effects and problems that they cause. She will get chemo one day a week for the next 48 weeks and basically they will be in rounda of 3 and go like this:

week 0: Vincristine, Actinomycin-D, Cytoxan (VAC)(Atlanta)
week 1: Vincristine (In Albany)
Week 2: Vincristine (In Albany)

week 3: VAC (In Atlanta-requires an overnight in Hosp.)
week 4: Vincristine (Albany)
week 5: Vincristine (Albany)

Etc.....So every third week we will have to go to Atlanta for the other drugs and an overnight because she needs to have IV fluids and some other meds that help prevent side effects from the chemo.

Along with all of that, there are things that I will be doing at home for her weekly like central line maintenance, blood draws, preventative medicine etc....

The BIGGEST concern for McKenzie during treatment is probably infection. The chemo will cause her blood counts to "bottom out" which will put her at a very high risk of getting a life threatening infection. They consider fever to be a medical emergency and any fever or infection will probably result in a hospital admission. So basically that is it. We have just begun the journey of a lifetime!! It is my hope that each of you are able to walk along side us during this journey...It seems to be a very lonely road.

Carol

Friday, January 24, 2003

6:00pm
Thank you Lord!!! All of the test have come back negative for metatisis. We caught this horrible monster before it had a chance to spread. The only thing that came back was a tiny "spot" on one of her left ribs but the dr is not at all concerned and said that we will just "watch" it. He felt it might just be where pressure was placed on that side during surgery or something.

11:00pm
Well, I never thought that anything would be more difficult than what we have already been through but as I sat and watched the chemo go into McKenzie it was the worst thing so far in this whole ordeal. I hate this whole thing, I want to just wake up and it not be real!

"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose"

Romans 8:28

Friday, January 24, 2003

McKenzie continues to recover. She is doing so good (an answer to many prayers). She will go for her bone scan today at 1:00 and if all looks well we will probably start chemo this afternoon.

I have such anxiety today about starting chemo. I don't know if it because that will make this so much more real or what. I hate the thought of that "poison" going into her precious little body even though I know it will get rid of the cancer cells. It is just so scarey to think about. Anyway, back to more positive thoughts.....Still cannot begin to thank everyone for the tremendous amount of support. Steve and I are just in awe of everyone that has rallied around us and I tell you that I think it is literally what is holding us together right now. Again, Rhonda, Anjee, Celina, Jennifer, and Deanna....You have given us such peace in knowing that Logan and Kylie are in such good and LOVING hands as we are able to focus all our attention on McKenzie. Thank you just seems so inadequate.

Please continue to pray that the test come back negative, that McKenzie continues to heal, that the chemo is effective in ridding her body of the cancer cells while sparing her good cells, and that she have minimal if any side effects.

Thursday, January 23, 2003

Well, our day has started very early. We had to be at the hospital at 8:45 to get McKenzie ready for surgery. Of course most of the time was spent waiting which I have decided is what we will be doing most of. All the paper work has been done and Dr.s have been by and they finally came and got her about 12:30. Again, letting her go was so scarey. This will be her 2nd major operation and she is only 4 months old. It just breaks my heart. The talks are to start chemo either tomorrow or Saturday depending how McKenzie does in surgery and depending on the tests to make sure the cancer has not spread.

McKenzie did wonderful in surgery. It took about 1 1/2 hours and she came up to us in the room where she will continue to recover. She will get a bone scan tomorrow and then that should be it for the test. We will be discussing chemo today.

Please pray that all the test come back negative. Please pray for wisdom and discernment for our Ped Onc so that he can provide the best treatment options possible for her. And most of all continue to lift McKenzie up.

Carol

Tuesday, January 21, 2003

Well, we finally got the call. My precious baby girl has cancer. She offically has Embryonal Rhabdomyosarcoma. I just sit here in disbelief and denial. How could this be?? She is only 3 months old???

We have to be in Atlanta on Thurs for more surgery and more tests. She is scheduled for surgery for central line placement, bone marrow biopsy, and lumbar puncture at 11:45am. She will also need a bone scan on Friday. We have to be at the hospital at 8:45 to start getting her ready. Steve and I have decided to go up tomorrow (Wed) so that we won't have to leave so early Thursday morning and be so tired. I just can't believe this, its like a bad dream.

I just pray that McKenzie comes thru surgery safely and that all the tests come back negative.

Sunday, January 19, 2003

We are going home----YEAH!!!!!!!

McKenzie has done so well. We still do not know anything about the pathology but they will call us as soon as they know something. Dr. Rapkin came in today to talk to us. He is one of the solid tumor oncologist (the other is Dr. George). After much pushing on my part he finally told us that when he called down to talk to the Pathologist he kind of pushed them for a "prelimanary" diagnosis or at least what they were leaning towards and they said that they are leaning towards Rhabdomyosarcoma. It is a malignancy that arises from the muscles. It is what I have been suspecting too, but as he added it could still come back benign.

Sunday, January 19, 2003

We are going home----YEAH!!!!!!!

McKenzie has done so well. We still do not know anything about the pathology but they will call us as soon as they know something. Dr. Rapkin came in today to talk to us. He is one of the solid tumor oncologist (the other is Dr. George). After much pushing on my part he finally told us that when he called down to talk to the Pathologist he kind of pushed them for a "prelimanary" diagnosis or at least what they were leaning towards and they said that they are leaning towards Rhabdomyosarcoma. It is a malignancy that arises from the muscles. It is what I have been suspecting too, but as he added it could still come back benign.

Sunday, January 18, 2003

As a side note, when I was posting yesterday's journal entry I tried to go back and edit it to add something but it wouldn't let me so I will add it here, I also wanted to thank Jennifer Williams who has also selflessly volunteered to help in anyway and has kept Logan this go round---Thanks Jennifer!!!

McKenzie continues to heal, she is doing so good. She is a strong little girl. She hasn't hardly needed any pain medication today. Hopefully we can go home tomorrow. Talks still continue to be directed towards cancer and chemo but then they tell me to be optimistic because it can still come back benign! The waiting is the HARDEST part. I would just rather know what we are dealing with and start trying to deal with it than sit here in this world of the unknown, it is killing us. One minute I'm sure it is benign and the next I'm talking as if we already know she has cancer.

We pray that 1) the tumor is benign, 2) that McKenzie continues to heal, 3) that God provides Logan with comfort during a time where he cannot understand or process what is going on, 4) and that he bless all the people who have been touched and involved in this trying time in our life.

Friday, January 17, 2003

Today McKenzie is slowly recovering from her surgery. Dr. Brand came by to check on her and talk to us. He said the surgery was pretty extensive, even more so than he thought it would be. The tumor stretched from the bottom of her 12th rib (through the muscleculature) to the top of her right hip bone. It was also pressing up on her right kidney and was big enough to push out her back. Dr. Brand was happy with the way the surgery went. He said it was successful in that he was able to completely remove all of the tumor. I continued to pressure him to tell us what he thought it was. At first he said when he saw the tumor it looked like a neuroblastoma but then he quickly determined it wasn't. As for that that is about all he would say. They did do a frozen section during the operation which should be able to tell right away if it is either benign or malignant but wouldn't you know they weren't sure. The only thing they were positive about was that the cells of the tumor were "spindle cells". It would be next week before we would have final pathology and until then we would not know. Obviously they felt (as I did too) that we were dealing with something malignant because our talks started to focus on chemo.

We are just thankful right now that she made it thru surgery and she is healing. We are also thankful for everyone in Moultrie who is praying, and for Rhonda, Deanna, and Anjee who are helping with our other children, and providing tremendous support to Steve and I.

Thursday, January 16, 2003

Surgery Day!!

We would be a work-in to the surgery schedule so we weren't sure as to what time. They stopped letting McKenzie eat at around 5:00am so as you can probably guess by the time they took her to surgery we had one STARVING baby on our hands. She is such an angel though because she really didn't fuss too bad. Rhonda and Deanna (friends of ours from here) came up to be with us and to tend to Kylie so that when McKenzie was done we could focus on her (that was such a wonderful thing that they did!). Finally, they came for McKenzie at about 5:30pm so Steve and I walked her down to the OR. I cannot begin to tell you how hard it was to give her to the OR nurse and watch her walk away with my precious baby.

We got periodic updates thru out surgery and she sailed thru surgery (thank-you Lord). She got back up to us at about 9:00pm. Her little face was so swollen from all the fluids and off and on she would wake up and cry out. For the most part she slept the whole night. I requested morphine periodically thru out the night so that she wouldn't hurt.

Wednesday, January 15, 2003

Today we are scheduled for a CT scan of the chest, abdomen, and pelvis. We are meeting with Dr. Bergsagel at 4:00pm. The CT scan is scheduled for 3:00pm. We are to register at 12:30 and then starting at 1:00pm, McKenzie will start to be prepared for the CT scan. She will have to drink the oral contrast over a 2 hour period then have the scans. She did great drinking the contrast. They had to start an IV so that her next set of scans they could give her IV contrast. As expected she hated that. They thought they would have to sedate her for the process but poor little thing she fell asleep and layed still for all the scans so we were glad they didn't have to sedate her.

By the time the scans were done it was time for our appt. so they called the dr and he said he would just meet us up at the hospital to discuss what is going on. He got there within about 30 min and was really very optimistic that it was a benign mass. Regardless, we all were in agreement that it needed to be removed so we were admitted that day for surgery the following day. We met with Dr. Brand the pediatric surgeon that evening and he discussed what would be done. I pushed him for his opinion but he wouldn't budge as to whether he thought it was benign or malignant. Steve and I were extremely worried, one that she even had to have surgery and be put to sleep, but mainly that it would come back as cancer. We held (me not to good) strong to Dr. Bergsagel's optimism.

Monday, January 13, 2003

Oh, it took forever for Monday to get here. I worried all weekend. Dr. Mark Blanchard did her ultrasound. Immediately we were able to tell that the mass was not a cyst that it in fact was something solid (another notch in my fear belt). It did not appear to be attached to the kidney which was a big concern going into this. They could not tell though if it was in her muscle or attached to the abdominal wall and he said that the only way to tell that would be a CT scan. He did say that he did not like the looks of the mass and that it didn't "look" good??? He explained that either way she would probably need to go to a children's hospital because the tumor was pushing up on her kidney and was obvioulsy growing and getting bigger. So whatever it was it needed to come out. He said that where ever we go they will want to do their own scans so there was no since in doing them here. I agreed. He called Dr. Melaine and sent me right back over to her office so that they could refer us to a children's hospital.

When I got over to the office Dr. Melaine looked very worried and did say that Dr. Blanchard told her it didn't look good. We didn't discuss "cancer" in any detail but she mentioned a few possibilities that it could be; neuroblastoma or rhabdomyosarcoma. She refered us to Dr. Bergsagel at Children's in Atlanta. He is a pediatric oncologist and we were going to the cancer center. Everyone kept telling me that it could very well be nothing but the whole time I was thinking then why are we going to see an oncologist??? Our appt was scheduled for Wednesday 1-15-03. Dr. Bergsagel said that this sounded pretty urgent and that they needed to see as soon as possible.

Saturday, January 11, 2003

We get to the Dr's office and as Dr. Melaine was examining her she said that the mass really felt "cystic" to her. I felt some relief to hear that but I was still overwhelmed by fear. As a nurse you just know of all the things (good and bad) out there and my nature of course is to immediately think cancer! But in reality I told myself that would be IMPOSSIBLE because 3 month olds' don't get cancer! She said the only way to tell for sure was to get an ultrasound so one was scheduled for Monday morning at 9:30am

January 10, 2003

Tonight, Steve and I were getting the girls ready for bed. I had McKenzie and had just finished feeding her. As I was burping her my hand brushed up against the nodule that was now a huge mass. There was absolutely no mistaking it. It had really scared me that it had grown so fast that Steve or I had not noticed it from last Friday to this Friday. Thankfully, the pedi's office is open Saturday mornings. Steve called and woke me up at about 8:00am to let me know that the offices were open from 8:00-12:00. I called and got her in to see Dr. Melanie Wills at 9:00.

January 3, 2003

Little did we know that today would mark the beginning of a very long and frightening journey. Steve notice a small lump on McKenzie's back right above her right kidney. He asked me to look at it and I did. It did not alarm me. We would reposition her and it would go away. We never gave it a second thought.

----End of History----