Home and doing much better!

Jessica was discharged from the hospital this past Wednesday afternoon. It was a much longer stay than usual and certainly longer than hoped for, but we think we have things under control. Thank goodness for all of the amazing people on the Peds floor at DRMC. They always make our stay as comfortable as possible. We feel very at home when we are at the hospital believe it or not! Jessica's blood cultures did come back positive, both from her central line and her arm. Always one of the things we worry about, but we feel that we caught it early. Jessica is on 2 antibiotics, Fortaz and Vancomycin. The Fortaz will stop once her ANC is .7 or
700. She was .5 yesterday. They will draw her blood again tomorrow and hopefully we can stop the Fortaz. Her Platelets have really taken a hit with this infection. She had to be given 4 units of platelets in less than a week. Her platelets were 10 last Thursday so they gave her a transfusion then. By Sunday they were at 8 so they gave her 2 units (which we have never had 2 at a time before). Monday they were at 80 and by Tuesday they were 40 and on Wednesday they were 15 so they gave her another unit then. She also had another blood transfusion on Wednesday before we left. It has taken a toll on her little body. Antibiotics certainly work for her, but they can sure mix up the system. She feels really good and then suddenly her stomach will hurt. Not only does she have the infection, but I think we are seeing even more of the cumulative effect of chemo. We are so close to the end of treatments, but there is a part of me that just wants treatments to stop now. She truly has done so well, its just hard to see her hit the bottom. So many children struggle with many more complications than Jessica has had, but I just want the treatment to be exactly what she needs, no more, no less. And we will probably never know what that is exactly. Medicine is hard. In many ways more of an art than a science. Very difficult to make the best decision always. I know the answers are there, we just need to be really be prayerful and seek for them in the right places! Her counts are showing signs of return now, but they still may postpone chemo for another week. It might be really nice to have the week to regroup and definitely important for Jessica's little body to make a full recovery!!! Primary Children's will decide on Monday.

High fever and no immune system

Jessica and I came early this morning to the hospital. She had low grade fevers off and on through the day yesterday and last night hovered around 101. After talking with Primary Childrens and our Doctor here, we decided to bring her in. Her fever has reached 104, which is very unlike past visits for fever with no immune system. We have given her Tylenol, but that only brings it down for a short period and she still stays around 100.7 then climbs back up. She doesn't feel like eating, but she is resting good, most of the time. I was questioning coming in because every other visit like this has led to the fever quickly subsiding and cultures always coming back negative. We had one positive last visit, but at that point she had her normal immune system back. As always, Jessica is such a good sport. I am glad we came in. It is always scary when children get fevers. It is the normal response of the body, but it always causes stress and worry, especially with no immune system. Cody brought Jessica in this past Thursday evening for a transfusion of platelets. That went just fine. We knew then that her red blood cells or hematocrit was low at 24, but the CBC blood test early this morning showed her hematocrit at 20. They gave her a transfusion this morning. We needed to come in anyway, but wish she didn't have the fever. We will be here for at least 48 hours. This has definitely become routine, but always a worry. We are so close to the finish line and we just hope and pray for no serious complications. Jessica's little body is so strong, just hoping that she will feel better very soon!!

3 more treatments and a great CT

Tomorrow, we should be able to leave the hospital around 3 p.m. We have been admitted here at Primary's since Tuesday. After tomorrow we will have 1 overnight stay, 1 four day stay, and 1 more overnight stay, all with 3 weeks in between. I can't believe Jessica is almost finished with treatments! They did a CT scan of her abdomen and chest on Tuesday. Everything looks good. There is nothing in the abdomen and the small spots in her lungs are more than likely leftover from the tumor. They may always be there. One shows calcification, which is like scar tissue and the others are almost like a left over tumor skeleton. Our doctor feels like we are moving in the right direction! So many miracles, each and everyday! We have met two new families this trip. Both have children that have just recently been diagnosed with cancer. My heart aches for them. They are beautiful families with such amazing little children. They too, will make it through! It is hard to watch others just beginning their journey, but looking back, the journey goes by so quickly. Once again the reminder to treasure each moment, each day. This thought has been coming to mind a lot lately; Come what may, there are miracles everyday! We just need to make sure not to miss them and find as many opportunities as we can to smile and be grateful for what we have been given! Easier said than done at times, but it can be done, I know it can!
Jessica is amazing! If she feels aches and pains, she rarely shows it. I ache for so many of the children here who are struggling so much. Jessica had her time in the beginning, but has made it through the rest of these past months amazingly well! I hope I can be just like her someday!
Tomorrow, Jessica, Jacob, and I are thrilled to travel to Shelley, Idaho to join Anna, Aly, Caleb, and Dad at Grandma and Grandpa Schmitt's. The 3 kids have been up there since Monday. Cody will arrive a few hours before we do. We are excited to be all together again to celebrate the 4th of July. And we can't forget to watch the Price is Right Monday morning (the 4th of July). Cody has his moment of fame : )
I will eventually get some pictures posted, but for now just know that all is going well and that we hope that for all of you as well!

Blood transfusion with 2 big sisters

When we left Primary Childrens last Friday we knew that Jessica's hematocrit was only 25.7 so a transfusion was in her near future. With transfusions, the more you have the more likely you are to begin having reactions to them. We like to spread them out as much as possible, but her count this morning was only 20.2 so they wanted her to have a transfusion. Her platelets have dropped to 56, so we may need those, but hopefully they won't get to transfusion point. The neulasta shot given has boosted her white blood cells and ANC up at 7.8 and 7.6 which is the higher end of normal, so that is great. We are hoping to not bottom out! We will keep our fingers crossed. We are here for the transfusion now. It has been a special trip because Annalise and Alyson are able to be here with us. We left the 2 brothers with Dad and the 3 girls have been enjoying being together. The children under 14 visiting rules were lifted just a few weeks ago. Not being able to be with Jessica in her rooms has been hard, especially for Annalise. This is just what they needed. They have played candy land, put Mr. potato Heads together, visited the playroom that I didn't realize they had here at DRMC, and they are now watching a movie together. We love it here at DRMC. They are so good to us!
Jessica has been such a great example of strength through this whole experience. She is constantly amazing us with the things she is able to do! And her brothers and sisters and parents too, have grown so much. But, like us all, there are times that make us stop and think. Last week, while we were up in S.L.C. still at Aunt Amelia's house right before heading to the hospital, Jessica was eating a bowl of cereal and out of the blue she said, "Mom, I wish I didn't have cancer. How did I get that tumor, that rock?". I had a hard time holding back the tears. I explained the best I could and she moved on happily. I am actually glad, in a way, that she expressed how she was feeling. She had never said anything like that before, but tonight she made another comment as I was putting her feeding tube in. She was upset because she didn't want to take medicine by mouth, but she didn't really want the feeding tube either. She said, "I wish I wasn't sick." Boy do I ever wish the same thing and to hear her say that. I just love my little girl. No parent would want their child to have to go through these difficult things, but I know there is a plan, a perfect plan. Our loving Heavenly Father knows that we need challenges to grow and become better. With the loss of a good family friend and the amazing strength shown by his family, I have once again thought hard about what is most important. I fall short each day, but I hope I can slowly but surely learn to treasure each day and truly enjoy the journey. I hope I can show my love always, even when that seems hard to do. We never know what will come. Life is so short. Too short to not make the most of everyday!
So grateful for all that I have! And so grateful for all of you and your many examples of strength, unconditional love, hope, and faith!

Fun times and another treatment

It is hard to believe that it is June 7th. Time has flown by. From May 28th until June 4th we were able to be in SanDiego with the whole Chipman family. It was a wonderful family vacation!! Jessica's counts were at a great point the day we left and we had no complications the entire time, just a very happy little girl and family. The beach house, one day at Sea World, one baseball game, pictures at the SanDiego Temple, and hours and hours of sand, sun, sea shells, family time, and the kids favorite...sand crabs, made a perfect trip! We were all a little sad the day we had to head for home. Sunday afternoon, the 5th, Jessica's blood was drawn and her counts looked great. Her hematocrit at 26 was low, but not a problem for chemotherapy on Tuesday. We left Sunday evening because of a kidney test (GFR) that had to be done at 9 a.m. Monday. It has to be done 24 hours before the start of one of the drugs, Carboplatin. (sp?). Jessica was admitted today at 1 p.m. 2 drugs, Cytoxin and VP 16 have been given. We will be here until Friday as the drugs are given each day for 4 days. Jessica's kidney function was not quite where it should be. The dose of Carboplatin would need to be lessened. Our Doctor decided to do another test over a 24 hour period. By tomorrow afternoon we will make the decision whether or not to give the carbo. It is only given on one of the four days, so it will not affect the amount of time we are here. Because Jessica only has one kidney it is a worry. There are many things to worry about. We just want the very best for her and sometimes in medicine there isn't always a perfect answer for everything. Just very grateful for good doctors who try so hard and give so much time to better the lives of others!
I have so much updating to do and many wonderful pictures to share along with some funny stories, memories, and acts of love by family and friends. We love you all and know that Jessica continues to do so well because of your many thoughts and prayers!

Counts are good

Yesterday Jessica's counts were great and they scheduled our arrival time for 1 p.m. today, Tuesday, May 17th. Her ANC was the highest I have seen it in a while at 4.9 or 4900. Total white blood cells were 6.1. Her platelets were 298. Her hematocrit was 24, so almost to transfusion point, but they just decided that if she needed a transfusion they would give it to her at PCMC, which is what they did when we arrived today. Dr. Affiy wanted her to be given the red blood cells before chemotherapy. It is now 10:30 p.m. And we have just started chemotherapy, but even though it is late, we should still be able to get off good time tomorrow morning. They have been hydrating Jessica since we got here. Her urine output and certain ph levels have to be at certain levels before they can start chemotherapy. Through the night we get her up every 2 hours to go to the bathroom. Sometimes she needs to go even more often than that. She is such a trooper! She just let's me pick her up, carry her to the toilet, set her down, and there is no complaints. Anyway, all is well. Even though she wasn't seeming super tired with her low hematocrit, after the blood transfusion the color came back into her skin. Little rosy cheeks....pretty darn cute!

One more change

Last Friday we received a call from our Dr. at Primary Children's. After a meeting with all of the doctors that have been working with Jessica, the general consensus was that Jessica should still stay on the higher protocol of chemotherapy. More information came back on the warnings that had come back on this protocol from the clinical trial and it was found that out of the 3 deaths (total children- 36), 2 were unrelated to the drug treatment. With as much success as Jessica has had on this treatment, they all felt that she should continue on with this protocol. If she came in today with the same diagnosis it is true that they would not start her on this protocol, but we believe that it is a blessing that Jessica was able to receive this treatment and continue it because her tumor may have never been able to be removed as successfully as it was. Our Doctor is always so great to have us think about it and make sure that we agree. Cody and I agree with the doctors, even though it will be hard to see her blood counts drop so dramatically. We are just very grateful for good doctors who are constantly thinking about Jessica and very concerned about what is best for her. As long as Jessica makes blood counts this next Monday, we will head up Monday night or Tuesday morning for an overnight stay for chemotherapy. Jessica is still doing great! Her ANC (Immune system cells) came up even though she received the lesser chemo on May 3rd. We continue to count our many blessings!