6/11/98

Well it took long enough for me to update huh?

It was an overwhelming task getting into the house and as normal for construction and the like nothing went as planed or on schedule. We got everyone moved in the last week of May and have finally got to the point of being able to enjoy the house and being together even though there are still boxes stacked around and other tasks undone. More on that later but first let me update you on Kelley's status.

Kelley had her every three month MRI the first week of June, we were dreading this in a big way. Chantel had a peek at Kelley's chart and the last MRI had comments that there was possible new tumor growth, inconclusive to determine, but that should be watched.

What did this mean and why did the Doctors not tell us? We thought about all the angles and possibilities. This would mean that the tumor would be chemo resistant. We had discussed and prayed about what would be different if the next MRI did indeed show new growth… a very upsetting proposition for us to consider. If the tumor was not responding to the Chemo we saw no reason for further treatments. Chantels insists that she would not put Kelley through another surgery… in short all it would change would be having Make-A-Wish move up Kelley's wish date and then hospice care. We were preparing ourselves for the possibility.

Fortunately the new MRI gave conclusive results that the suspect area was indeed scar tissue from the original surgery.

Thank you Lord, our prayers answered.

It was not without strife that we got the news. The MRI was on a Thursday with the results to be relayed to us on Monday. On Friday the hospital called and said they wanted Kelley to come back in for another view, Chantel took this as a way to get us back to the hospital to receive the bad news.. not so. They just wanted another picture.

We were told however that they had detected an irregular heartbeat in Kelley, they feared it was from the chemo treatments and set up more x-rays for the next day. The X-rays showed that the tube for the port-a-cath that was placed in Kelley's chest and feeds the chemo directly into the right ventricle of Kelley's heart was pressing against the heart valve. A surgery was scheduled to remove and replace the port.

Kelley really dreaded the surgery… even though it was so very minor compared to what she has been through. I think she had such fear remembering that last time she was this aware she went into surgery for the most part normal and emerged mostly handicapped. It is so hard to see your child in such painful fear and not be able to do much to really comfort them.

We were blessed in that the procedure was called off after they manipulated the tube and got it off the valve. It left a very small incision and very little pain for Kelley. In fact when she was released she was ready to go shopping in the gift shop.. atta girl, never stop shopping!

She had passed the ½ mark with the Chemo in mid May, only four more treatments between then and November and she is done! Rejoice! The June treatment they used Kelley as a test case to try a new program of administering the Chemo at home rather than the overnight stay at the hospital. I am not sure if this is intended to make it easier on the patient, the parents, the nurses or the insurance company but it was no picnic.

It began with two nurses arriving at 7:00 am and starting the chemo drip, They were here most of the day monitoring the progress and it was great for Kelley as she watched videos and TV all day. When I got home from work she was still getting the chemo and ready to go to her room and lay down. They give the Chemo with a huge amount of fluids to allow it to pass through the body and Kelley was doing a good job passing fluids until around 6:00. She did not have any fluids pass by 8:00 and we let the nurses know (they called every 2 hours to get stats and check on us) they said if she did not "go" by 9:00 they would have to come out. Well no luck so they headed back to the house. The concern was that the kidneys might shut down causing real problems.

The nurse that came tried various things to encourage Kelley to go with limited success, she drew some blood and left about 11:30 to take it to the lab. At midnight I got a call saying they would have to add something to the drip to make the kidneys work. Around 2:00 am they got here and stayed until 4:00 am. A long night for all of us.

The next day they were back at 8:00 to pick up the equipment and draw more blood. We then had to wash everything that Kelley came into contact with that day three times to remove the toxins. They also warned us not to let Chase near the dirty linens or Kelley as the chemo residue can actually cause you to get cancer… Ironic isn't it that the cure can give you the sickness.

It has been 6 days since that treatment and Kelley is starting to show signs of low WBC and platelet counts again. We go in for blood work tomorrow and I suspect a couple of bags of blood in the next few days.

The good news is just three more treatments and she is done! What a celebration and joyous day that will be!

We are all really enjoying being together, I love just crawling up on her bed and talking with her… sometimes joking around, sometimes crying and praying. I had wondered how Kelley feels about Kelley being sick and in little pieces I am getting the picture. She talks, about when she will walk again, roller blade again, swim competitively again. She is aware that it might be that she will never do this things but is sure that with hard work she will do them all again. You know, I believe her.

It will be a long time before she can even build up strength to get better… her legs that were once strong limbs of a swimmer are now thin as her arms. She is stretched and exercised daily but the chemo continues to rob her body of muscle tissue and strength. She still is not able to eat very much and the night feeds via the G-Tube is where she gets her protein. After being tube fed for a year it is really hard to get back into the habit of eating solids and must be worked into very slowly.

Kelley had a hearing test today and it is getting much worse, all frequencies are now being affected and the audiologists suggested talking to Dr. Sanders about reducing the volume of Cisplatin. What a hard decision that will be…. Risk not killing the cancer cells to save the hearing or sacrifice the hearing. She also suggested we get Kelley fitted for hearing aides now. Funny thing is I cannot tell Kelley has any hearing loss, she does not seem to notice either.

Kelley got into the pool for the first time last week and it was so great! She had a life jacket on and was very intimidated and scared at first, just sitting on the first step. As she got used to the water and more confident she held onto one side of the pool and Chantel on the other. I saw my little girl take REAL steps for the first time in 9 months! The she really surprised me and began to breast stroke and butterfly stroke around the pool!! It was the first time I seen Kelley "look" like she was normal in so long I cried with joy. As soon as she feels up to it we will hit the water again.

As much as we like the house the absolute best part is that we are a family again. Chase mentioned every day for the first two weeks that the best part was that we were all together again, a feeling shared by all of us. He has made some new friends in the neighborhood, found out that riding his bike on two wheels is not near as hard as he remembered it and begs to swim every waking moment. He has been a really great help with Kelley too, sometime more in the way but trying to help nonetheless.

Kelley has tried to add to her page here and answer some messages but gets frustrated with the ataxia not letting her control the mouse and keyboard and the difficulty of reading the screen.. I am working on ways around that for her and thinking voice recognition software and a bigger monitor when we can afford it.

Both Kelley and Chase are off to camp in two weeks with other cancer kids and siblings. I think it will be great for both of them. A good experience and the chance to meet other kids in the same boat. They are both looking forward to it.

You know, I realized that when we meet new people, like the new neighbors, they think that Kelley has been like this all her life. They never had the opportunity to see the energetic kid so full of life we knew just ten months ago before this terrible illness took control of her, and our lives. Others can't understand how we still function on a daily basis, how we lead a somewhat "normal" lifestyle. Well I ask, what are our choices? We can be depressed and dwell on the "poor, poor, pitiful me" attitude or wake up and deal with it every day. We strive to make every day for Kelley the best she has ever had. I can't imagine us doing it any other way. We do not know what the Lord has in store for us but it is fruitless to let the days we have go by wasted, we must treat everyone as a special day and make to most out of it. There really is no other choice for us.

Again, thanks for keeping up, I will try to keep you more abreast of the happenings now that we are settling in and have the computer set up.

Remember, make the most of everyday you have, value your health and take care of yourself. And oh yeah… please don't park in the handicap spots if you don't need to, it gives a whole new prospective to those spots when you need one everywhere you go!

God bless you and keep you.