Topsy Turvy Tuesday

Today is the day we have been waiting for. The news as to Mom’s next step in her treatment.

Yesterday was the PET scan with the radioactive dye. It scans the whole body and gives information as to if the cancer has spread. Mom had to fast again and it was after 2:00 before the three of us (Mom, Dad and Kimberly) ate. She was famished. That can’t be good for a sick person can it??

We left hopeful for a good report today.

Last night we all went to Mom and Dad’s to celebrate Sadie’s 4th Birthday which is Wednesday, but we wanted to get in her birthday party in case we got a call changing Mom’s plans. Sadie is Troy and Maria’s oldest, and she is pure delight. She and Nate (2) entertained us all. The kids always lift Mom’s spirits, but as she has been feeling so good, she really had a great time.

So, this morning Dad, Mom, and I picked up Carmen and headed north. She first met with the Oncology Nurse Practitioner, and went over her meds, pain levels etc. The biggest praise there, is that there IS no pain. Mom is only taking her blood pressure pills and potassium. That is the first time since October that she has been pain free, and completely narcotic free. What a huge praise that is in and of itself.

Next she saw one of the Orthopedic Dr.’s. She went over a few more things and just briefly hit on the MRI findings.

Here is what we found out:

1) The tumor has had no significant shrinkage. The MRI that was done was over a week old however, and Mom feels her leg has gone down even more just since then. It is possible that it has shrunk since the MRI, but the from what they saw, it measured less than a centimeter smaller. This was tough news for Mom. She was really convinced the chemo had shrunk it enough to show some real progress in minimizing the size. But again, it may have gone down since the test, there’s no way to know.
2) Mom will definitely be receiving 2 more rounds of chemotherapy.
3) The port is not correctly placed. (She had to have an x-ray and consult with the radiologists as well) It has to be redone before chemo starts.
4) Mom will most likely receive 6 weeks of radiation AFTER the chemo regimen is complete. This will require daily radiation for a full 6 weeks. There is a possibility that she can get it in Centralia however and not have to go to Seattle daily. (Another praise.)

It was difficult news for her to hear. They wanted her in on Thursday to start chemo and she was just having a hard time with the news that she would need it at all. Dr. Conrad (her Orthopedic surgeon that will be removing the tumor) said that he could remove the tumor now, but that the reason the two additional rounds of chemo is necessary, is to prevent the spread of this aggressive form of cancer to other parts of her body. Two rounds would not save her life.

Some frustrating news was that we could not get the results of the PET scan she did yesterday. Mom is in a Sarcoma study. The terms of the funding (dumb as they are) state that the surgeons and Dr.’s cannot see the results of the 2nd PET scan until after the 4th round and 3rd PET scan. They do not want it to influence how they would treat Mom’s cancer (or anyone else in the study). It would seem to us and them, that it is helpful and vital info, but Mom had to agree before she started treatment that she would participate and that she understood this step. Ok, 2 ½ months later we forgot that part. They did say that if Dr. Conrad felt strongly that he needed the PET scan results in order to possibly change her treatment that he could look at them and simply remove her from the study. He did not feel at this time that he needed the scan to decide what was in Mom’s best interest, so she stays in the study and we won’t know that outcome until after round 4 and the 3rd PET scan.

So, here now is some good news. Since the last two rounds have absolutely kicked Mom on her toosh, they have decided to reduce her chemo dosage by 20%. They are hoping it will help reduce her staggering side effects, and eliminate the toxic brain reaction she has had. The first round was horrific, the second was awful as well. You may recall during round 2, she couldn’t talk for about a day and a half, but could hear and understand perfectly. It was so frightening for her.

Some more good news is that they agreed after the x-ray of the port, that it was not placed correctly. It will have to be redone and they cannot do it until Monday. The significance of that is that she won’t go in on Thursday for the chemo. She earned a “stay out of jail” card and gets to have the rest of the week and the weekend off before going back in. They will redo the port Monday morning at SCCA, then send her over to the hospital to start the 12 hour flush before chemo starts with a new port. Yeah! No more pain with the access. I know this email is full of information and lengthy, but I would ask you to indulge me for a bit more to share something else.

About 13 years ago, our son Brittain was 10 weeks old when he got a strange disease known as Kawasaki Syndrome. Britt spent about 5 months in the infant ICU unit at Children’s hospital in Seattle. We were told on 3 separate occasions that they did not expect him to live through the day. Every day they came and poked him and poked him throughout the day to draw his blood for this test then that test, as they futilely looked for what was wrong. After about four weeks, he had been poked over 65 times. It never got easier to watch. His veins failed time and again. They decided after they diagnosed him that he would need some kind of a more permanent access line that would enable them to draw blood without the constant pokes. Also he needed an iv that would not fail every few days. Brian and I had gotten good at questioning every blood draw by asking if others could be combined that were to be taken later and if it was absolutely necessary. We became bulldogs at only allowing specific people from the iv team that we knew tended to get the blood the “first time” . They came to us and told us there was a new line similar to a pic line. It was called a Hickman catheter. It went in near the neck and had two lumens (ports) that were placed at the top of the heart and allowed iv meds into booth ports. However, if blood needed to be drawn, they could stop one port and draw blood from it. He would need surgery to place it. We agreed, but I told them I wanted to meet the surgeon that would be placing it and ask him or her questions. We were told it was fairly new. As I recall it was somewhat of a prototype and there were only a few between Children’s, Harborview, and Swedish.

I came in and saw this older gentleman in his late 60’s. He had a sweet gentle spirit and kind tender eyes. I asked him all the questions we had and asked him if he had a lot of experience. I told him that we had watched our son through so much pain and that I wanted the best there was to place this new Hickman catheter. He took both my hands in his and looked me straight in the eyes and said “If you would allow me, I would be honored to place it for you. I have the most experience there is in placing the Hickman lines”. I said “Thank you so much. We would really appreciate it. We have watched him suffer through a lot in his short life. But, I don’t know your name.” He smiled a very sweet humble smile and said “I am Dr. Hickman.”

To this day, when I talk about that I cry. Today, we found out that Dr. Hickman will be replacing Mom’s line on Monday. I cried again. God is so good and faithful. He is in his early 80’s but still climbs mountains and is as steady and skilled as ever. I am taking a current picture of Brittain for Mom to show him. The Dr. in radiology today told Mom it would make Dr. Hickman misty eyed to see a picture of him. That will be two of us.

Thank you all for your prayers for Mom. We left and got lunch around 3:00. We were famished. We ate outside at one of the waterfront restaurants. It was beautiful and sunny. I felt like the sun was a warm blanket God wrapped around our shoulders at the end of a long, long day. He is awesome.

We thank you for your love, concern, prayer and support. You are each a blessing to our family and we love you.

Trusting in Him,
Kimberly and family