day 59

Hard to believe we have been home this whole week. Life jumped back to crazy within minutes of walking into the house but crazy is good as we have learned through Collin.
He has decided to flush his own lines. He has watched us do it forever so he thought he could handle it. I supervised and he had it down the very first time. He cleaned his caps well and made sure there was no air in the fluids and did a great job:)
We went to the grocery store. Collin wore his mask and the checkers were having a slow moment and asked him why he was wearing it - we explained that he has to be super careful not to get germs from people. One of the sweet women explained in a very sensitive way that her husband had died of Aplastic Anemia. Collin handled it in stride until the car where he worried if he could still die. That required a long talk about how we still have to protect him but that his future looks good.
I know it is nearly May and it should be warm and spring but I am grateful for the unseasonably cold weather hat has kept Collin from too much outside time that worries me with his central line.
It has been a good few days!

Collin is home!!!

Collin's appointment yesterday was the best one yet. He had his blood drawn as normal and then examined by the doctor and the nurse practitioner. We were asked if we had any concerns and I replied "no, just waiting to go home" we were shocked when the doctor said "I think that is doable, let's look at his new numbers when they come in." I held my breath knowing things can change but we were hopeful. Collin's platelets had jumped to 113 and his red blood cells went from 8.8 to 10.0! His white blood cells were at 1.3 - so nothing is moving in that category still. The spectacular news was that the doctor confirmed that all looked well and we could go home!! We were elated!! We visited the floor and saw our favorite nurses. We were sad that one of our little friends that was waiting for a bone marrow transplant had passed away. We spent the afternoon packing up and cleaning the apartment. We will keep the apartment for another 4 weeks or so to make sure we don't have to keep Collin there due to complications but we will be happy for each day at home right now. Collin wanted to surprise Kelsi and Austin. He was so excited. The very first thing he did was ask to ride his bike. He loved it. I was a little worried with him still having a central line in but stood outside, visited with friends, and tried to forget the last few months for just a moment. It was a late night by the time we rounded everyone together for family prayer and our hearts were full to be together again. Collin was so happy to be in his own bed. As he went to sleep we talked about the miracles he has had in his life and he was surprised that it has been "easy" compared to what other kids have to go through that we have met. He has been blessed and we know that he is healing through miracles provided by our Heavenly Father. He has more bumps in the road coming but we think he has a lot more normal moments ahead of him now and he can work into being a kid again! I will post a picture tomorrow when I get things a bit organized and situated.

Day 54-

Collin spent the colder end of the week with a couple of visits from extended family that helped break up the boredom. He also had Dad for the whole weekend. Ken and I traded out so that I could see our older son's musical that he is in. We had a bit of car trouble so Ken came up Friday night to rescue me and then I went home to see the musical on Saturday. It was a treat to get to go home for a bit and the musical was so fun to see. We are grateful to all of the friends who helped take Austin to practices everyday when we couldn't be there. Collin is sad not to be able to go see it but we were happy to find out that the school has someone recording it so that a DVD can be purchased to watch. That should be a fun family night!
It felt so good to be home that we decided it might really help Collin to be home for just a little tiny bit. I had asked the doctors at the last visit if Collin could go home for a short time on a weekend when getting back to the hospital if needed wouldn't have traffic and could be done faster than during the week. I was told that we could but they were going to pretend they didn't know. We waited all weekend to make sure it seemed safe. Ken drove Collin home and we had Sunday dinner together as a family! He was happy to see how Ken had cleaned and rearranged his room. (We want to be ready for whenever the doctors say he can move back home). I drove Collin and Kara back to the apartment and all went smoothly. Collin said it was hard to leave and I wondered if we made it worse on him. We will have to evaluate if that was helpful or not if the opportunity arises again.
We are hopeful for tomorrow's numbers!

Day 50- Halfway point

Collin woke this morning excited to go play a round of golf. Grandma Jensen was going to join us and Grandpa was going to walk to help find us balls. Collin kept pressuring me to go earlier but we had cold weather moving in today so I felt like we should wait until the afternoon when the weather would be warmer. We should have gone with Collin's plan. We teed off and gusts of wind,rain, and lightening began and we left after putting out on the first hole. It was disappointing but we are glad we left when we did. It didn't get any better the rest of the afternoon. Collin asked if we could go play "chicken foot" with Grandma and Grandpa instead. We were grateful to spend the stormy afternoon with them. It was while we were sitting playing the game that I realized today is Day 50. Collin is halfway there.....
The doctors indicate that generally Day 100 and 1 year are big milestones in Collin's road to recovery. There will still be hospital stays for sickness and other issues but each day after 100 gives Collin better odds of a full recovery for life. I am grateful that Collin is doing so well on Day 50!

New Numbers-Day 48

Collin had another blood draw this morning to get a CBC and to check his cyclosporine levels. Those levels help trick his body into accepting his new bone marrow and the cyclosporine needs to be at just the right amount so it gets monitored and changed as needed. His CBC results were back fairly quick today. HIs platelets climbed from 53 to 88 and his red blood moved from 8.1 to 8.8! Both of those levels are officially out of the transfusing range which is great! I was ecstatic at first but then the nurse shared that his white blood cells were down a bit again from 1.4 to 1.3 and his ANC had fallen just slightly from .7 to .6 - the doctors considered this basically unchanged from last week. Not horrible news but since he had gone a whole week we were all more hopeful about what his numbers would be today. The doctor indicated that while Collin is atypical in the fact that platelets are leading the charge up (platelets are usually last) he was not concerned. We believe because Collin participated as part of a study (that had a lower amount of bone marrow given with the belief that it would keep GVHD from becoming a chronic issue) that the effect is a very slow rise in numbers. So no bad news today just not the outstanding great news day we were hoping for. While we tried to adjust to a more patient attitude after the appointment, knowing that his slow numbers mean he can't go home for quite some time still, we played the thankful game. We thought of all the good things we could on the way home from the hospital. Somewhere along the way, Kara piped in "we will get through this" in her chipper-know-it-all-5-year-old voice and continued "that is what Dad always says". So true. I guess kids listen to us sometimes. Who would have known?

Day 47

All has gone well these past few days with no need to see the doctors. He successfully made it a week between visits! We can't wait to see what his numbers are tomorrow. We are hopeful that his bone marrow is still working and kicking in even more. The days are getting long and we really want to go home. Collin thinks the days last forever. I remember as a kid thinking time moved so slow but then time changes as we are adults. We have so much to do and time moves so fast. I was thinking yesterday that for the first time in my adult life time is actually moving incredibly sloooooooowwwwww, which means it must be excruciatingly slow for Collin.
Here is a picture of Collin's medications that he takes at exactly 10 am and 10 pm.

Day 43

Collin isn't going back to the doctors until Monday if he continues to not have any concerning symptoms. It is just a waiting game now for his bone marrow to work at making blood without triggering GVHD. It is a little more difficult to be patient now that there isn't anything to do or see. It is also difficult not to have CBC's that gave us a good look at what his body is doing. We have come to rely on those blood tests so much. On the flip side the good news is that if all goes as planned Collin doesn't have to sit through hours of doctors appointments until Monday. Hooray!

Day 42-6 weeks

Collin had his numbers come back late yesterday afternoon from his blood draw. I had hoped to update everyone last night after he was tucked in to bed but the power went out at the apartment again. There was mild snow and rain here so maybe it is a fairly regular occurrence. Collin's white blood cells were unchanged at 1.4. HIs ANC dropped slightly from .9 to .7 but wasn't concerning the doctors. His hemoglobin had come up slightly to 8.1 from 7.7 - still not above transfusing levels of 8.5 but there is still the concern that we let his own body continue to try to help itself while we watch. So no transfusions again yesterday. Platelets were the news of the day - moving from 20 to 53 all on his own. In the hundred or so CBC tests that have been run on Collin's blood we have never seen his platelets actually go up until last Wednesday when it went from 18 to 20. That small bump was significant but yesterdays move up was big! Collin's biopsy showed that Kelsi's bone marrow made up 97 percent of the bone marrow in his body. Anything in the 90 percents is considered successful. The biopsy shows that the engraftment is taking place nicely and now we just work through keeping his body from getting GVHD. He is doing well - he wears his mask when needed out around town without complaining. He washes his hands and worries about his food being prepared correctly. He doesn't complain that he can't eat out or that he has to take so many medications. (I should take a picture for his friends to see all of the pills he takes each morning and night.) He has said how much he would like to go home and hates doing school work with just me. He misses his friends and school class. I am grateful that he is 8 and understands what is going on in his body and can have a good attitude through it all.

Spring Break continued....

Ken brought Kara back up on Thursday evening to join the rest of us for the weekend. Thankfully she seems to be over whatever small cold she seemed to have been battling. The apartment is small and with six of us it got smaller but we were grateful to be together knowing that it would come to an end this weekend. We took some short trips out around Salt Lake since Collin didn't have any doctors appointments scheduled and we were trying to keep everyone from going crazy :) Friday morning we ventured to This is the Place park. We saw the monument but did not pay to go in the village since all of the buildings are closed until later this month. We moved on to the Church History Museum. (we skipped the children's section where kids have touched everything and families congregated.) Then Collin had a great round of golf at Forest Dale with Kelsi and Austin. We took a cart since I was concerned that walking the whole course for him would be too much. It was the right thing. He just isn't able to go very long physically without tiring yet. On Saturday we ventured out to the State Capitol and then to a tour of the Conference Center. I'm not sure that any of that was very interesting for Collin but he didn't complain other than to tell us when he was getting tired.
Ken has taken Kelsi and Austin back home for their week of school and activities. Kara is staying in Salt Lake with us for the time being. We will be back at the hospital tomorrow to see how Collin's bone marrow is doing,

Day 36-Numbers are UP!

Collin's appointment today was to give him some blood and platelets since on Monday he had been borderline and the doctors were worried about letting him go to low. After the CBC came back from the lab Collin gave a little fist pump when he heard his numbers. They weren't spectacular but they were almost back to where they were when he left the hospital and that is up from where they have been for the last 10 days!!! He had made some white blood cells on his own and he had even made some platelets. He is still at extremely low levels (18 on Monday and 20 today - normal range 150-400) but he went up which hasn't happened in 3 months so that is worth the fist pump!!!

Easter, General Conference, and Spring Break

Easter morning found half of our family at home and the other half in Salt Lake. Thankfully the Easter bunny was able to maneuver through the trickiness and was not thrown off. Simple baskets were delivered to the child where they slept and a note was left for the Easter Bunny with the hope that we could all join back together at Grandma and Grandpa Jensen's home for the easter egg hunt. The Easter Bunny hid some eggs and thankfully everyone was feeling better and we were able to have a wonderful easter together! We are grateful that Grandma and Grandpa live in the acceptable travel zone for Collin :)

General Conference (the time our church is able to hear from our leaders and our prophet) was this past weekend as well. Always uplifting and one of our favorite times as a family. It was nice that Collin could listen and feel included since we can watch it on TV.

Spring break started for our older children this week which is why we had hopes that the whole family could be together for a little bit of time. We were lucky enough to spend Sunday night after our Easter celebrations all back at the apartment. Collin had to be at the hospital bright and early for blood draws on Monday morning. The other kids waited patiently and then we went to a heated driving range to hit golf balls. Collin had been begging to do that ever since being released from the hospital but it has been so cold - Ken had the smart idea to find a driving range with protection and heaters. It was great. Since Spring Break shows no real signs of warming up we decided to take the kids to the Barnes and Noble bookstore to pick out a book to enjoy while they hang out at the apartment. We did that for our family home evening. Collin is getting really good at wearing his mask in public places. He doesn't complain and doesn't really seem to notice the people who take second glances at him. Each of the kids picked out a book after a lot of thought with excitement to get home to start reading. A snowstorm developed and we were in the thick of it driving home. As we drove into the parking lot we saw a flash of blue light and then everything was pitch black dark. It looked like the power for the whole grid had gone out. Austin luckily found a headlamp in the car and Ken found a flashlight. We entered the apartment knowing we had very little in the way of emergency supplies. We aren't allowed to bring blankets to this apartment (they carry too many germs) and without any heat I was a bit concerned whether the few blankets they supply were going to cut it. We laughed, gave Collin his medications by flashlight, got his lines flushed, and put everyone to bed disappointed they couldn't read. Sometime in the night the power was restored and we woke to this picture of snow this morning and Kara's sniffles worse. By this afternoon she was handed off again and Ken has her back at home. We are beginning to really cherish the moments we get when we are all together.

Collin is headed back for more blood draws tomorrow morning. His numbers are not moving. Since being released from the hospital his numbers have fallen and then just stalled out. We anxiously await anything that can be considered a move in the right direction.

Excursions

Thank You to everyone who sent us suggestions for exploring Salt Lake. We wished for warmer weather this past week (it was freezing here with snow) but bundled up in coats and managed to walk around a short time at Sugarhouse Park and Liberty park twice. The doctors want Collin to try to be a bit more physical and the apartment is too small for him to move much so we braved the cold with a beanie on his bald head. We also managed to get Hot Chocolate twice at the Hatch chocolate store. (For those who have seen the TLC series it is run by the couple named "the little chocolatiers" and have just signed for a full reality show on their lives. You can see more about them here.) We have heard the hot chocolate is to die for and it was pretty amazing. We met the couple that owns the store who helped us try to find something that Collin could have but all of the chocolate candy had sat out so it was just hot chocolate for him. He was not disappointed and wanted to take his siblings back to share with them. Collin takes his hot chocolate seriously :)

We had planned for the family to come up to Salt Lake for Easter weekend and stay next week for Spring Break. Kara is still sniffling so we decided one more day away for her. Ken stayed at our house while Kelsi and Austin drove up to be with Collin. We were bummed when Austin woke this morning with what might be the beginning of a cold and had to stay masked all day until we met up with Ken and sent him back home. We are all incredibly disappointed that our plans to be together as a family aren't working out as we hoped. We are tired of not being together. We did spend a little bit of time at Grandma and Grandpa Jensen's house to dye Easter eggs together. Ken, Grandpa, and Austin went to the priesthood session and then we went our separate ways.

the numbers at day 31

Collin went in for a blood draw and check up to make sure he was doing well before going into the weekend. His numbers were not encouraging. They weren't bad but they weren't great either. The word of the day is patience. (Sounds a little like Sesame Street but after never-ending Disney channel I would happily take the muppets back). Collin's white blood cells were at .9 -ANC at .3 - His Hemoglobin was 8.7 (they transfuse at 8.5 so he will likely need blood by Monday) and platelets were at 30. The bone marrow transplant director came to reassure me that it was quite normal and we just have to give Collin's body time. He said that this very slow engraftment was good to prevent GVHD. They have no information from the biopsy yet. We also followed up on pain in Collin's feet that we can't figure out. We don't know if it the medications or the engraftment or 35 days inactive in the hospital that is causing some pain as we go out for walks. We bought new shoes trying a different arch to see if it would help. We have added stretching and hope that with more activity it goes away.

Collin asked 6 or 7 weeks ago to see his bone marrow in a microscope. He even got the courage up to ask one of the hematology doctors if he could see his own bone marrow from the first biopsy. The doctor thought that was a pretty cool idea and promised to get the lab to send his slides if Collin got a microscope. So we shopped and took a microscope to the hospital for Collin to explore with. It was difficult to get the slides but the Bone Marrow Nurse Practitioner was finally able to give him a slide of his own bone marrow this past Monday. It was pretty cool but it was even cooler to have one of the doctors spend a few minutes with us today telling us what we were looking at. (we took our microscope with us - how geeky are we?) They have told Collin they will get him another slide when his bone marrow is working and full of neat cells.